Vaginal fistula with seton ....yikes

Crohn's Disease Forum

Help Support Crohn's Disease Forum:

Sailorluna

Sailorluna

Joined
Oct 2, 2010
Messages
1,324
Ok ladies.
When I went in to have a seton placed for a rectal fistula they discovered one in my vagina and put a seton there to. I looked at it and it is awful to see this string looking thing coming out your girl parts and up your rear. I was completely unprepared for that.

So... has anyone else dealt with one of these things? Can you use a tampon or have sex??? I hate that the surgeon talks to you while you are still coming out of the drug fog and don't understand enough to ask questions.
 
I am sorry, I don't have an answer. I wonder if you wouldn't have better response in the female-OB/GYN section? Just a thought, I would like to see you get help with this.
 
I've never had a fistula in this area; but I wanted to send my support, healing thoughts and best wishes for sucessful treatment your way :)
 
I've had a fistula, just peri-anal, not recto-vaginal. So... the purpose of the seton is to drain the abscess fluids way into the little branches and tracts internally by stopping the scabbing up of the entrance and exit. By the time the seton is ready to be removed the internal tissues will be healed up and there will be a simple 'tube' to deal with. There are a couple or so surgical procedures to close the internal entrance depending on your surgeons preference, where it is, and what he thinks might work. They have somewhat poor sucess rates. You should quizz him/her closely!

I don't think sex will be much of an option :( all those sore tissues are making me whince :(
 
I use to have rectal/vaginal fistulas. They are a mess and heartache to deal with. No one ever gave me this option for healing but then again, I haven't had those problems for 16? years, since I got a colostomy. If I were you I would avoid putting anything in either of these orifices. I did have to avoid those areas myself in the past and can tell you that I evolved in the sex area when going for other options with pleasuring myself and my husband...I could extend this but instead I will just tell you that you can email me and I will go into more detail if you want. Good luck and be patient.
 
Do you have a follow-up with your surgeon soon? I don't like getting the foggy talk either, although even when I'm not foggy, I haven't had the time to get the best questions ready yet either. If you can't wait for your follow-up, I wouldn't have any hesitation to call the office. Hang in there Barbara!
 
Hi all,
I had my 2 week follow up today with the surgeon and everything looks good. He thinks the drainage seton in the fistula that goes through my vagina will come out the beginning of November (my next appointment) the other one will be there longer.

I just wanted to throw this out there in case anyone else is in my situation and searching for answers. It is very hard to find info for dealing with a recto-vaginal fistula. Sex is ok with the seton in your girly bits and so is wearing a tampon. You are not going to break the seton and it won't hurt you either.

My fistula there is not terribly active (no drainage or anything) maybe the answer would have been different if it was? I am not sure.
 
Thank you for being so frank. Having a fistula is not fun, to have one in your girly bits sucks. I'm dealing with one. It does not need surgery as it is draining and we keep a close eye for any changes. It could change at any time so, thanks again. Sex is a huge question for anyone possibly facing this challenge.
 
Yes, thanks to all on here. I think the franker the better on this forum. Fistulae are such awful, embarassing things the effects of which some people might not want to bring up - even here - so I'm sure your posts are helping many people facing similar issues.
Take care and may the healing continue x
 
This is great thread.

I guess I am confused on the recto-vag fistula.
I assumed that I had one, since I was leaking a teeny bit of stool out my vagina. I also leak air through there when I feel like I am going to fart. Definite hole from rectum to vagina, yes?

I told my OB/GYN, and though no one has ever seen it, she assumed that's what it is. I gather that it is very small since I don't have a ton of issues with it, and I think it has closed up some since being on Remicade. I only have air leakage sometimes and very rare slight fecal leakage.
My OB/GYN said that she could put a patch in there when I was ready for it.

I guess my question is, are there different kinds of recto-vag fistulas? I can't see how a seton would work in my situation.
 
My Butt Hurts said:
This is great thread.

I guess I am confused on the recto-vag fistula.
I assumed that I had one, since I was leaking a teeny bit of stool out my vagina. I also leak air through there when I feel like I am going to fart. Definite hole from rectum to vagina, yes?

I told my OB/GYN, and though no one has ever seen it, she assumed that's what it is. I gather that it is very small since I don't have a ton of issues with it, and I think it has closed up some since being on Remicade. I only have air leakage sometimes and very rare slight fecal leakage.
My OB/GYN said that she could put a patch in there when I was ready for it.

I guess my question is, are there different kinds of recto-vag fistulas? I can't see how a seton would work in my situation.
Click to expand...


I do not know if there are different kinds of recto-vag fistulas. I can tell you that I also only had occasional air leakage - it has been years since I passed any fluid or anything. I am not sure why he put the seton in when it was not active. The surgeon was in there for a regular anal fistula/abscess when he found the recto-vag one and put in the setons. I think that he may have cleaned up some part of it and then put in the seton to help with any resulting drainage from that.

The OB/GYN said she could put in a patch? That's interesting. I haven't heard of that. What does your GI say about it?
 
Sailorluna said:
The OB/GYN said she could put in a patch? That's interesting. I haven't heard of that. What does your GI say about it?
Click to expand...

He said that is her department, lol. I guess if I was complaining about it, they'd be in a hurry to fix it, but I am willing to live with it as is if it doesn't get worse.

The way I see it is like 2 garden hoses next each other, and a hole through from one to the other. If you duct tape one, it stops leaking into the other one. I just can't see where a seton would go. Esentially, the patch sounds like some surgically implanted duct tape fixup.
 
Hey Sailorluna...I don't have any expereince about fitulas, but suspect I may have them based on "new" symptoms and conversations I've had with experienced people. It was suggested to me that I ask my GI Specialist to recommend an OBGYN that is familiar with chron's and our symptoms. Good luck, I hope you find your answers and comfort!
 
Hi all, I have just had three setons removed that went from my vag to my rectum (gross I know!). I had the setons in for a year and the fissure had become so infected because I had the fissure for four years before the doctors decided it was not an infected hair follicule (followed shortly after by diagnosis of crohns).
My drainage has stopped and I just tried my first day without wearing a pad YAY!!! I think it looks heaps better now and praying that it heals up as have not been able to have sex for a whole year (I'm also just married for a year). The doctor said I could after the first seton was placed, however I found that it pulled and it became red and sore around the entry. I would say go for 'alternative' options to have "fun" with your loved one haha
hope this helps someone. I agree, it is very hard to find info on vaginal peri-anal fissures.
 
My butt hurts!!! My pal!!!! You are the first person I have ever found who has suffered the same thing with this particular fistula position and symptoms(although any fecal matter with me was just juice, nothing solid)!!!! Mine was healed and closed from Remicade, although it has since stopped working for me and I am now on Humira and Methotrexate. I dont know about you, but I found it extremely upsetting when air would pass through. It was very stressful and upsetting to not have control over disgusting fart air exiting your body, ya know? I had mine for a couple of years, before it finally healed. I truly hope yours heals all up and you dont have to think about it anymore! My thoughts are with you........ and all suffering on this site........
 
rectal/vagina fistula

I have never had the option of having the docs put a "patch" on my fistulas. It does seem to me like if they could do it, it would help though. I don't have any currently but I had some bad times with them in the past. It seems like the stool coming through would be very irritating to that delicate skin and it would get inflamed and worsen if it continued to collect there. I hated that burning hot little shit leaking through to my vagina so much. It burns and smells and made me not want to leave my house, or even move for fear of it starting to suddenly run through. The air coming through was almost as horrible because when it's happening I was always picturing in my head the mess that was happening in my underwear! I feel like fistulas in our vagina area are one of the worst things to deal with....for me anyway. I thank God for the blessing we have in our Country, such as awesome Pads and indoor plumbing. I watched some videos of this happening to young girls in Africa allot because they were raped and/or forced to give birth way to young and there insides would just tear. These poor souls would just have to walk around with leaky poo just streaming down their legs...and that was in their "hospitals". So, some things can be worse. I hope I haven't been too graphic. I read a few comments above and it seemed to me, if there was ever a place to spill my guts about this stuff, it is definitely here. Thanks everyone for being so forthcoming with this subject.
 
My thoughts are with you too Lesliegg!!! I know exactly what you are saying, and I saw that same show about those young African girls!!! It really was awful. Hang in there honey.....
 
Hi all,
I just have to share! The surgeon removed the seton from my recto-vag fistula. Yay!
I am so excited - hopefully the other one can go away soon.
 
Glad to hear you got it removed! I don't have any experience with setons but I'm sure you have quite a bit of relief now.
 
Thanks K - that seton was not painful as much as a bit annoying and itchy sometimes.
Mostly it is just embarassing to have a string running between my girly bits and rear.

Silly maybe but I am soooo happy to have it gone.
 
I'm not a girl so I can't say I know what you're going through but I definately feel for you. I would be so happy to have it gone as well. Hopefully things continue to progress for you over the holidays!
 
Can I ask what symptoms all of you had? Where you in pain? Pee a lot? Have cloudy urine or white cells in your urine? Fever? ect ect
 
Hi gang, first post :)

I know this is an old thread but just wanted to share my experience of a perianal/rectal fistula. Initially I had faecal and wind leakage and it was pretty rare. Following a mess up of an ileostomy and reversal (not my choice!) I get daily leakage of pus and liquid poop. I'm day 4 with a seton and have attempted but failed with the Sexy time! I am sore but I think it's mainly nerves and expecting pain so you tense up a lot. It doesn't help the mood when your husband thinks it's funny to flick the string and say its like a little blue willy...

Anyway!

Seton due out Aug and either patch or plug follows that. Mush more likely to work these days too.
Will post my results as and when :)
 
@lookatme the fistulas felt like a little tickle of fluid running through my vagina and then it would hit a sore spot and burn like hell. It was the most depressing and time of my Crohn's disease life. How could I'm feel good about myself knowing toilet paper was my guard against a splash of burning shit running down my legs...well pads too but I remember wads and wads of TP. My Doctor showed it too me once and it just looks like and little tini slit, not ugly or mean like I had imagined. Gotta go...just though of a question that is to important to forget to ask...not what section do I go to.......?
 
I know this thread is old, but it has given me hope. I had surgery last week to put in a peri anal seton, and woke up with 2, one of which was recto vaginal. I am devestated as feel like this is the most grosse thing that's can have, but seeing your posts on here and given me a bit of hope that it will be removed before too long. And I can stop feeling so grosse!!
 
I had a seton for my recto vaginal fistula. Truely it did not really bother me. only gave me GP a nasty shock when whe did my PAP. She had a strange look on her face and said, you have a really strange green thing! Laughed when i said it was just my newest seton.

Was still fine to do all the usual things one does down there. Really, was no more annoying than the other setons I had.
 
I have the setons currently, that I have had for about 5 years. One of them is a vaginal fistula. It took me about 3 years until I could have sex, both feeling comfortable and healed enough not to hurt myself. Unfortunately I have a lot of experience with abscess, fistula, drains and more and if anyone has questions feel free to ask, I would love to help someone else. And yes you can wear a tampon, just be careful when taking out so it doesn't get caught on your wire!! :stinks:
 

Similar threads

L
Seton
Replies
0
Views
913
LittleBluebird
L
T
Never wanted to have Crohns, now I have it
Replies
1
Views
1K
Scipio
Scipio
V
My Novel, Pain in My 🍑
Replies
1
Views
4K
valleysangel92
valleysangel92
O
Please tell me about your success closing an enterocutaneous fistula with Remicade
Replies
5
Views
1K
Robcos02330
R
M
NEW TO CROHNS FORUM
Replies
14
Views
2K
Monet Janet
M

Latest posts

Back
Top