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09-08-2015, 11:50 PM   #1
erinjayee
 
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Intimacy with a seton

Hello,
I am seeing a colorectal surgeon tomorrow and most likely will end up with a seton placed in my perianal fistula after they drain the abscess. My abscess is very close to my vagina.

One of my MANY concerns is sex with my partner with a seton in place. How does this affect intimacy? What experience have others had with this?

Thanks for your advice or personal experiences.
09-16-2015, 05:28 AM   #2
Kat123
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Hi erinjayee,

Sorry that you are going through this. This was also one of my key concerns before I had my seton placed in February this year. I had only met my boyfriend in January, so was obviously very worried about how it would affect things, but he has turned out to be incredibly supportive.

Firstly, sex and intimacy definitely are possible with the seton in place. It doesn't hurt and doesn't get in the way or pulled or anything. I also have a perianal fistula with an opening quite near to my vagina.

When I had the drainage and seton placement, there was quite a large hole, about a cm diameter, which I hated at the time but now it has healed over means that the opening where the seton comes out is a little further away from my vagina.

I would say my biggest problem regards my fistula and sex is my own feelings about it and my body confidence. My boyfriend has always been very understanding about it though and says it doesn't bother him at all, but he understands that it bothers me. When we are having sex - in fact pretty much all the time - I have a dressing over the fistula opening. I use Mepore or Opsite dressings, or just non-woven guaze swabs. That makes me feel a bit better that it's hidden but it wouldn't really be necessary and we have had sex without, especially when it's draining a bit less.

My best advice would be to speak to your partner about your worries, so that they can reassure and support you. From my own experience, it has been more an emotional problem than a physical one.

I hope your seton placement goes/has gone well.
09-18-2015, 01:21 AM   #3
erinjayee
 
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Thankyou so much Kat123 for your response. You have definitely put me at ease. They didn't place the seton as couldn't find an obvious tract (if the abscess reoccurs they will have another go at it). So I may still end up with a seton - we will see. But like you say I do have a large wound, at least 1cm in size.

Putting an adhesive dressing on for sex is such an excellent idea - I've just been using gauze or combine in my undies. It's still too painful for that at the moment - hurts just to roll over in bed sometimes. How long before yours healed and the pain was gone? Its been exactly a week for me now.
09-18-2015, 03:53 AM   #4
Kat123
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Hello,

Well, that sounds quite positive that they didn't find an obvious tract, since it sounds like it wasn't very big if there is one. Only my very non-medical opinion though. I really hope that it can just close up and you not get any more problems. Do you have IBD, and if so are you on any medications that would help it to close up?

Yes, sounds like you would be too sore to be thinking of sex at the moment. I was having my wound packed and dressed by the practice nurses, and after about 2.5 weeks there really wasn't anything to pack, i.e. the wound was very shallow, so I just started doing the dressing myself at home.

I first went back to college after 3 weeks, but I was sore and felt like that was too soon, and it was only one session because I had an assessment. After 2 weeks I was going for walks though, and first rode my bike after 6 weeks.

I think it was after 5-6 weeks that it looked like the hole had almost closed up, but even now 6 months later there is a red and sore area around the seton. So it's not really painful, more sore, but I sometimes take paracetamol, especially before a bike ride.

It was one of the practice nurse's idea the adhesive dressing, to keep the packing in place as it kept falling out. Its other benefit is as it's closer to the skin, you're less likely to get urine on it when you pee, so it's more convenient if out and about. Initially I was also using some of the packing aquacel dressing to lay on top of the wound and soak up the drainage.

I'm pretty sure I'd had sex before 3 weeks as the practice nurse asked me how I was going to manage it as the hole was 'right there'. My boyfriend said I should have told her to mind her own business I probably rushed it though as I was really anxious I wouldn't be able to, and also was in a very new relationship. Just be gentle with yourself, it will be fine
09-22-2015, 02:03 AM   #5
erinjayee
 
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Oh it's so nice to hear from people who have dealt with these things!! I had follow-ups today and they said if it hasn't healed in another 4weeks (6total) than it means theres possibly a fistula and they will go in and look a bit harder - but im hopeful that it will heal up and never bother me again.

Im now no longer taking endone which is great and i'd call it more "sore" than painful. I reckon sex would be do-able by now - its just the wound and possible ooze that bothers me, so im going to dry that dressing thing (thanks so much - I think my partner is starting to get a little sexually frustrated haha).

Nice to hear you can ride a bike too. Im not overly active but recently started seeing a physical trainer a few weeks before this started and I'd love to get back to it

are they planning to remove you seton one day?
09-22-2015, 01:36 PM   #6
lgpcarter
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I echo what Kat123 said. I had two in for 8 months, and a big issue for sex once the healing was done.

I had them removed almost a year ago and still have periodic drainage. I typically like to shower just before.
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Diagnosed in with Crohn's in large and small bowel in 2000.

Seton placement (2) and fistulotomy December 2013. Setons removed July 2014.

Laparoscopic Right Hemicolectomy July 2016, 25 cms removed

Current meds: Entyvio every 4 weeks, Imuran 225mg, Flagyl and Cipro 500 mg twice a day

Previously: Remicade, Humira, Simponi, Pentasa, Sulphasalazine, Entocort, Stelara, Methotrexate, Prednisone
09-22-2015, 02:07 PM   #7
Kat123
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I tend to shower after, haha. I see what you're saying though igpcarter - also a good idea.

Good to hear you are off the stronger painkillers now erinjayee, and that it's not too painful. I'd never had a general anaesthetic before these problems but now I've had 3 and each time it's made me feel very down afterwards, coupled with the out-of-it-ness from codeine it doesn't make for a very happy time. Hope you are starting to feel better now. (Not saying that you've not got a reason to feel down, just emphasising the general rubbishness of the post-surgery state)

Riding a bike is very important to me, so I was keen to get back to it asap. I'm sure you'll be able to get back to your training too, just take it very easy at first walking was a good place to start for me, and I was so unfit it counted as exercise!

The plan was supposed to be to start the Humira after drainage and seton placement, then wait to see if fistula closed up around the seton, then take it out and hope it closes up completely. Now they are talking about surgery to fix it - LIFT procedure- but I'm not convinced. Studies show anything from 40-80% success rate, but they mainly excluded Crohn's patients. The only study which explicitly included Crohn's patients showed 33% success rate, but there's just not really enough data to say either way. I'm scared of surgery which might fail

Got MRI at end of the month so will see what that shows before making any decisions. After discussions with people on here I may ask about escalating Humira dose to weekly or changing to influximab, instead of surgery

Did you ever have any surgery to fix yours igpcarter? I'm also worried to just take the seton out, in case the abscess comes back again. Decisions, decisions...
09-22-2015, 02:11 PM   #8
lgpcarter
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Setons were enough to solve worst of the problems. Also had a fistulotomy at the same time. With Cipro/Flagyl twice a day since May, getting basically no drainage and haven't had an abscess since before seton placement.

Hoping to get into remission with Entyvio and then try to go off the antibiotics.
09-22-2015, 02:20 PM   #9
Kat123
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Does that mean they laid open part of the tract, except for the bit that went though the sphincter? Or was it on a different tract the fistulotomy? Antibiotics since May doesn't sound like fun, but good you've not had abscess and drainage limited, that's great! May I ask how/at what stage you decided to take the seton a out? Was the drainage already limited then? Sorry for all the questions! It's just really good to finally talk to people going through similar stuff.

Hoping the entyvio works for you
10-28-2015, 01:04 AM   #10
erinjayee
 
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It's been a while since I have been on here. So - I now have a seton in. About 5 weeks after my excision and drainage - the healed wound sort of 'popped' like a pimple and started oozing puss - they went back in 10days ago and found the fistula and put the seton in.

It's still quite sore..but I think I can see a suture holding the seton in place - so I think it's a bit painful when I sit or move funny because its catching the suture maybe. Still oozing puss (does that keep going forever?)

I see my surgeon next week. I THINK he said it was quite low and he could do a fistulotomy in the future (he spoke to me in recovery in a anaesthesia haze - so I could have dreamt it lol). But he spoke of advancement flaps earlier as well. Has anyone had there fistula successfully treated??

I wonder how long I will have it in. Hopefully not too long. Im a bit sad that I ended up with one - but really kind of happy too, that I am addressing the issue and wont get another abscess.

Hope all of your setons/fistulas are behaving xx
10-28-2015, 01:07 AM   #11
erinjayee
 
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And back on the subject of intimacy sorry....
After the abscess we had sex about 2weeks after the op - either with a little dressing or when it had completely healed.
Now that I have a seton - does it get caught during sex? or does it hurt the wound? I have read not to have sex for 2-3weeks or else you risk pulling the seton out.
10-28-2015, 07:59 PM   #12
Kat123
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Hi erinjayee,

I'm sorry that you had to get a seton in the end. I never had any sutures holding the seton. Mine moves quite freely. Will they take it out (the suture)?

I'm sorry to say that my fistula is still draining a small amount, but I've read on here people saying that theirs have stopped draining with the medical treatment. I think you may have said on another post you are on Humira?

my surgeon suggested LIFT procedure - also in that post-anaesthesia haze - but now says that it's not possible as yet as the tract is too big so going to go for scraping out the granulation tissue to encourage healing, together with upping Humira dose.

Regards intimacy, I think maybe you have to just try it when you feel ready and see what works. The seton has never got caught for me, but I guess it could depend on the exact location of it. I don't see how it could get pulled out - it's tied pretty securely.

Sending you support. Feel free to PM if you would like xx
12-08-2017, 06:01 PM   #13
k25
 
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How long after seton placement do people generally wait to resume having sex?

I got a seton about a week ago and I feel fine. Little to no pain, and very little drainage now (There was quite a bit the first few days). The fistula is far enough from my vagina that I feel like it shouldn't hurt or anything to have sex... but my post-operative paperwork said I should wait two weeks. That seems awfully long for something that doesn't have anything to do with my vagina and feels fine.

This is all assuming I can get over the embarrassment of being naked in front of someone with my seton. HA!
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