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?

That's brilliant news that your meds have made such a difference! Keeping my fingers crossed that both of us keep moving in the right direction! I know what you mean about being able to get down and play with your DS, so many Mum and baby groups have involvement sitting on hard floors and I just can't do it, I feel so self conscious having to pull up a chair when everyone else is on the floor!

Aww. How are you?
Back to work feels good. I'm still pretty sore, only went back to one job, not the other. Seton seems to be slowly cutting more and more so I'm trying to limit things that will speed it up.
Bring a pillow. We can't let it win. Memory foam pillows work awesome for the floor. That's what I use.
Today was my birthday.... My MIL got me the best present that someone with a fistula-in-ano with Seton could wish for lol

Aw Happy Birthday BMC! I hope you have a pain free and lovely day! Since my last message I've finished my course of antibiotics and been sitz bathing like crazy with the antiseptic wash my CRS gave me, the wound is feeling and looking so much better and smaller. I've just this minute come out of my follow up appointment with the CRS and he's really happy with the progress, he says it's now healing well and just to keep up the antiseptic sitz baths. I'm seeing him again in 4 weeks but he says by then he'd expect it to be fully healed and there will be nothing for him to see! After all the ups and downs of this monster journey I can't quite allow myself to think that will happen, but I'm feeling positive and praying it will! Your MIL did give you an amazing present! I get through sooooo many of those flushable wipes, I stock up at the supermarket every week and it's good having my baby with me so people will assume it's a baby related purchase! How is your stitch doing? Hope it behaves itself for your birthday!

Omg that's wonderful. I'm so happy for you, glad it's healing so well. Almost at the finish line!🏁🏁
Hahahaha I've been naughty and have been using sensitive Pampers wipes 😯😯😂😂
It was a pretty good day. My boss ordered lunch for my birthday, so I picked Thai, lol it was so yummy.
My stitch has its moments. It's still pretty sore, I've been having a couple clots 😯😕
Still waiting to hear about the referral appointment with the CRS. Hopefully soon.

Lots of healing vibes your way.

Yum, Thai sounds lovely, sound like you have a great boss! I treated myself to a nice lunch and some cake after my CRS appointment today to celebrate the good news although I would have bought the same if it was bad news to cheer myself up! My CRS originally mentioned using baby wipes but our plumbing wouldn't handle flushing them and I didn't fancy binning them, so the flushable wipes have been a life saver! I was thinking as I drove home I'd hate to think what I've spent on them over the last year! I'm definitely feeling optimistic after today but still don't want to get my hopes up too much till it's definitely healed as this whole thing has been such a rollercoaster 🎢! I hope your CRS appointment comes through quickly, when I visited my CRS the Friday before last I was in the same ward that I was in when I was first admitted a year ago for the first emergency surgery and it reminded how much more switched on and reassuring my CRS is compared to the general surgeon I first saw! I hope you get a good CRS too

Hahahahaha I would have treated myself too.
I find these wipes are softer than the baby wipes.

Yes he's very good. So understanding and accommodating, as he knows more or less what's going on. A benefit of working for a doctor 😉

I know I'm getting impatient waiting to hear about an appointment. I feel like my hands are tied. I go back to the general surgeon on the 24th so I'm hoping to hear by then.

How are you getting on BMC? Hope you've had a good week? I'm going to prefix this with a MASSIVE touch wood...Over the past week my healing has come on leaps and bounds to the point where there's barely anything to see anymore and absolutely no bleeding or discharge for about a week. I'm still sitz bathing (with the antiseptic wash from the CRS) and showering twice a day, although I'm not entirely sure I need to anymore as I don't think it's really an open wound (it's just really hard to tell by looking in a mirror lol ) so I'm going to keep it up until I see the CRS on the 4th of April just to be sure! Praying for us both, and hope this gives you a boost to know that there is light at the end of the seton tunnel

Omg that's wonderful!!! So happy for you. That's awesome news. Lol my hub just looked at me crazy cause I squealed lmao. Keep me updated on it 😁😁😁😁😯😯😯❤️❤️❤️❤️❤️

Im okay. Drainage is continuous, the opening looks pretty angry still 🙁 thankful for me I got my family doctor to fill my prescription for my meds as my GS was on holiday. Still waiting for the referral to a CRS. Hoping at my next appointment with the GS I get the information . DS is finally feeling better, lucky it's spring break for schools so at least he gets an extra week away from the friends to get better and be 100%. How's your DS doing?

Hi BMC, massive apologies for not replying to your last message, life has been pretty hectic with work and motherhood especially as DS has started walking and is now running circles round me! How was your appointment on the 24th? And how are you getting on? Just after my last message my drainage totally stopped and my wound seemed to have healed but it was hard to tell as it's an odd shape with a lot of scar tissue and is a difficult angle to look at with a hand mirror! So I carried on with the sitz baths once a day just incase it wasn't fully healed until I could have the CRS check it.

So...today I went to see the CRS and low and behold...it has HEALED!!!!! The CRS said that the shape of the scar tissue (its a bit of an 'indent') makes it a bit awkward to keep clean but as long as I use a couple of wipes on that bit and give it blast with the shower when I'm showering it will be fine and it should get less awkward in shape over time as the scar 'fills in' the dint. After over a year of sitz baths and dressings I can totally handle a couple of extra wipes and a bit of extra showering!!

I felt pretty emotional as I walked out of the hospital entrance after the appointment today. The sun was shining, the blossom was out and I felt like the weight of the world had been lifted off my shoulders. It was such a contrast thinking back to the terrifying dash through those same doors in the middle of a cold stormy night 17 months ago when that wretched abscess sent me into premature labour with DS and the nightmare abscess, fistula, seton journey began.

I'm still a bit nervous that it could come back but I'm going to enjoy the moment and hopefully it won't come back and I'll get less nervous over time! We're going to take DS swimming this weekend to celebrate being wound free and I'm going to book a spa break with some girlfriends. DH and I would love to have another DC at some point but we're a bit nervous after DS being premature because of my abscess. I'm going to let my body have a bit of a rest before TTC but have made an appointment with my Dr to talk through what happened and to ask if there's anything I can do to avoid another premature birth in the future (i.e. I'm wondering if I can have some blood tests just to be absolutely sure there is no infection in my system).

I really hope this gives you and anyone else with an abscess/fistula who reads this thread hope that these things can heal! When I first discovered I had a fistula I couldn't find many positive stories on the net at all, but I guess, as my CRS said, people do get better but it's just that they move on and don't talk about these things so I really hope this post puts some positive vibes out there!

Dear Dontstopmovin

I'm so sorry I disappeared. I had thought I responded to your message, and seemed to have run away without me ...

Hope all is well with you. How is your little munchkin?

I am finally waiting for a preop appointment for a LIFT, to be done in November or December. Here's hoping. Had to change meds again... Apparently I have alot of nerve pain 😞
Lots of love from Niagara
Xo
BMc

Aw @Bmc26, so lovely to hear from you

Hope your little one is doing well? So glad you're finally getting somewhere with the LIFT surgery, sorry to hear you're still having so much pain. Hope the stitch has settled a bit? Let me know how the preop goes.

Things here are good, DS has become a little chatterbox and gets more entertaining by the day! I'm doing well, touch wood I'm still fistula free

My scar is becoming less of a faff to clean, but still needs a couple of wet wipes and a blast with the shower. It also gets uncomfortable if I sit all day working so I just invested in a top of the range hemorrhoid cushion from amazon for when I work from home. I tested it out for the first time today and I'm in much less pain this evening than I normally am after a full day sitting Would be good to have it in the office too but I'd feel a bit embarrassed about taking it!

Randomly I was wondering how you were when I tested the cushion which is why I checked this thread to see if you'd posted anything!

I recently spoke to my Dr about how anxious I am about having another premature birth if we tried for another DC and the fistula came back, she was very reassuring about how closely I'd be monitored and also did a blood test to check my current levels of infection which came back totally healthy so that really reassured me a lot that the fistula is gone and another pregnancy would be ok. I still worry a lot about it coming back but I'm starting to relax a bit more as time goes on

That's so wonderful!!!
I'd whip that pillow up , own it haha.

Aww i miss that stage. My DS is in the horrible threes! Terrible twos are a lie it's the threes you have to watch out for lol.

Yes my GP put me on gabapentin, a nerve blocking med. So hopefully it works .

Woot all clear from the doctor, tome to start the fun of trying😉😉😉
So glad to hear everything is still on the right track for you. XO

I have just found this forum. I have had seton inserted one week ago and its so much harder than I thought to recover. Pain, discomfort and keep on top cleanliness. I have been signed off work for four weeks but even sitting normally a no go area at the minute!
I notice the posts on here from some time ago and would be interested to know what I can expect over the next few weeks/months.
My surgery next time is planned for April for examination and may remove. Mine was inserted due to recurrent abscess.

Corrina1972.

Seton can be so difficult. Last February when I had my first one inserted I was off for two weeks. In November I had two new ones placed, as my fistula developed into a sinus track.
Find a good pillow to sit on... Most days I still favour my opposite side.
I also treat with heat and ice when home.

Through my own research I've noticed that a Seton can either be very painful or not bother you at all... Unfortunately I have the first. It's been a battle to find something to ease the pain.. I have recently started CBD oil, it is my last attempt at medicated pain relief 😞.

I did find a couple really awesome groups on Facebook that have been great for support and information.
www.facebook.com/groups/AbscessFistulaSupportforWomen/
www.facebook.com/groups/fistulasupport/

Also feel free to message me anytime to chat, I've found it's hard to not feel alone in this process and to find people to talk to.

Hi Corrina, just on my lunch break so haven't got much time to reply but really didn't want to read and run.

I'm so sorry you're going through this, it's such a horrid condition with all the pain and difficulties with cleaning. Because it's an embarrassing location it's also really hard to explain to people so it does make you feel so alone, so talking to BMC on here really helped me.

As you've probably gathered from the thread, my seton was inserted in June 2016 after developing a fistula from an abscess in feb 2016 following the birth of my DS. It was replaced in October 2016 with a smaller seton and removed/laid open in Feb 2017.

Fortunately my seton wasn't as painful as BMC's. After a month or so I kind of got used to it, but it was a faff to clean, although way better than the daily dressings I'd been having to have prior to it. I did have huge anxiety as I was so scared of it getting worse and it demolished by body confidence which was already very low after giving birth.

After my fistula was 'laid open' in feb 2017 it took about 6 weeks to heal and since then, touch wood, I've been fistula free.

I still worry when I get minor pain from time to time, but I'm getting used to what pain is normal from my scar tissue now and starting to relax about it and think about it less and less. My dr did lots of checks and tests to put my mind at rest too, so do feel able to talk to your dr if anything worries you. Hopefully this shows you that things can and do get better

If you have any questions, or need any practical tips please do ask us no matter how tmi you might think they are! Feel free to pm me if you'd rather.

And please, please don't feel alone, BMC was a huge support to me, I don't think she realises how much it helped to know she was there and actually understood the full practicalities of what I was going through. We're both here now to support you

Speaking of which, BMC, I pm'ed you a couple of days ago to see how you are but now I can't seem to log into my inbox so can't see if you replied! So for now, how are you? And I'll try to regain my inbox tonight!

BMC, I'm sorry I've just ready your reply to corrina and saw that you had two setons in November. I'm so sorry to hear that, hopefully they will move you a step forwards towards healing. How are you doing since the November surgery?

Dontstopmovin

I'm okay. Still pretty sore. Alot of pain, I think I'm cycling absessing again 😞
But it is a sinus track now. Two external opening, one internal.

❤️❤️ You helped me too

I started CBD oil in attempt to pain management .. I go back to the CRS on the 2nd of February, so talk surgery... Again lol ..

Hi ladies,

Sorry to barge in, I don't have kids but signed up because like so many other it seems, I felt so alone and depressed trying to deal with these perianal abscesses/ fistula/ seton stitches on my own.

I've had 16 operations in the last 5 years on a reoccurring perianal abscess (all in left buttock). There was constantly talk of a fistula, but no one could ever find it. Finally in December (2017) I ended up with a horseshoe abscess and when they operated (after a week in hospital) they found the fistula had joined up with the sinus and eaten a hole into my rectum so they placed a draining seton.

I saw my surgeon in Feb for my check up and she has me booked in for Tuesday 6th March for a cutting seton to be inserted. I'm worried sick though as I'm still draining all sorts of gunk, I'm so sore still and during the bad snow we've had, I had a lot of pain right next to my anus on the right side, so I pressed it and i bled from mainly my bottom, but also the sinus for 2 days. I was losing blood worse than that you'd expect when having a heavy period. I rang my surgeon and she said to visit a&e but I just couldn't get there because of the snow.

The bleeding has stopped now but I'm still very sore and so stressed about it all. I'm beginning to wonder if this will ever stop!! ☹ I already suffer from depressing and anxiety and this is making life a nightmare as I never know what's going to happen next. The thought of the cutting seton doing damage and meaning a colostomy bag scares me to death too. Am I just worrying too much?

Sorry for going on, I tried to keep it short. Thanks for reading this far...
Jo

Exil 57

You poor love!!!
I know they say that there is minimal pain with fistula and Seton but that's just not true.... February has been a year with a drain Seton. It has it's days. Heating pad and ice help the most.

I have occasional bleeding with my Seton. Sometimes clots. The CRS told me it's mainly grandulated tissues and not to worry . But I Also find there isn't much information available for us.....
Fingers crossed for your surgery tomorrow. It's my birthday tomorrow so hopefully it brings you good luck.. I'm still waiting for another surgery date to have a LIFT procedure done at some point. It sucks we dont have a CRS here on Niagara, and I have to go to Hamilton to see mine 😞

Bmc,

Thank you for the good wishes, fingers crossed it all goes well and the cutting seton doesn't cause even more discomfort.

Happy Birthday for tomorrow, have a lovely day!!

Fingers crossed.
I definitely recommend checking out the group's I linked in a pervious comment. They are an awesome support. . One is all women. The other is coed, but it's people all over the world going through this. Helps me feel not alone.

Well the operation was a disaster. Karen (my surgeon), you're on first name terms after the first dozen ops I think, lol, said they weren't expecting to find what they did, and because things have changed considerably inside my rectum and it's not connected to my ongoing perianal abcess, new fistula, etc etc. they're leaving it alone for now. In fact all the new complex problems seem to be affecting my right side. Whereas the other 16 ops were all to do with the left. She can't tell me anything until I've had an MRI and then she's having a meeting with all the other colorectal surgeons in the hospital and then I'll be back in to try and sort things out once they know what they're dealing with. So yesterday's op was a disaster, they drained some areas and cleaned things up and took a biopsy but that's all I think.

I'll have a look at your links, I'm glad of anything right now, thank you very much.

Exile57.
I'm so sorry that your surgery didn't go well. But I sounds like you have an awesome doctor that seems to be taking great care in your case.
I know the frustrations of coming out of surgery with less then expected results. I'm still waiting for a surgery date, since February, for a lift.
I hope your mri has some answers 😞
I'll keep my fingers crossed for you.

Hi both, so sorry for not replying sooner, this thread keeps falling off my watching list.

@Exile57 I'm so sorry your operation didn't go well, I hope the MRI has given some answers that result in a treatment plan?

@Bmc26 also really sorry to hear you're still waiting for your Lift date, keep us posted, hope you hear soon. How is your pain level? And how is your DS?

Thinking of you both, it is such an utterly crap condition to deal with and you're both amazingly strong to cope with it

@Corrina1972 I forgot to ask how are you getting on? I hope your seton has settled and you're coping ok?

Touch wood, things continue to be fine and healed for me. I had a bit of a panic last week when I felt a very small lump on the opposite side from my scar, but my GP checked it immediately and said she was pretty sure it was just a random tiny benign lump of gristle in the skin layer and not the beginning of an abscess, so she said just to keep an eye on it and to go back if it grew or hurt; neither of which it has done, and if anything I think it's smaller than it was now.

Thinking of you all