Day 5 of Seton Placement for Fistula...Afraid Have Another

[Danu]

Hi everyone,

I just had a seton placed on Monday for a fistula from my rectum to adjacent to my b-hole. It was my first one, and it caught me totally off-guard. I'm diagnosed ulcerative colitis, and understand fistula problems to be more of a Crohn's thing (though have heard UC patients can have them too).

Since the surgery on Monday I have been religiously following a post-BM clensing. Go bathroom, gently spritz area with warm water from a bottle, gently pat area, then have a sitz bath. On Thursday, after wiping my vag I noticed stool and yellow mucous on my toilet paper. I was alarmed, but thought that maybe for some reason stool had traveled there while I was going to the bathroom. This has never in my life happened to me before, I'm quite a neat wiper I must say, but I wiped again and there was nothing there, so I dismissed it as a coincidence.

It happened again tonight and there was more. My doctor told me about rectal-vaginal fistulas and I'm concerned I might have one. I'm going to call my doctor on Monday and ask him if he thinks maybe I should have a MRI to confirm whether or not there are other fisutlas.

Anyone have any thoughts? Are setons placed for those types of fistulas also or can they just plug it to make it go away? This is really scary...and the whole thing has had a real emotional toll on me. I'm 28, this year my husband and I wanted to start trying to get pregnant, but I have just been a mess. Feeling depressed, scared, and frustrated right now.

 

[Grumbletum]

Oh Kat :-( Just what you didn't need. Are you noticing the stool after you pee, as well as when you have a BM? I'm glad you're getting in to see the doc quickly.

 

[lpinky82]

Hey,

I have a peranal fistula which is sort of in-between front and back was very painful until i got the Seton in, i had the Seton in for 2ys and it really help i still had leakage that i had to adjust to, i didn't like having it in but my fistula kept filling up and i was hospitalized 3 times in 3mths for drainage , after the Seton was put in place i haven't been hospitalized at all. x

 

[Grumbletum]

Hi lpinky, and a big warm welcome to the forum I'm sorry you're also dealing with fistula issues. It's a real battle, huh? If you have time, pop over to the Your Story section and introduce yourself- get to know some of the folks.

 

[Sailorluna]

Hi Danu,
I went in for seton placement next to my anus like you. When I woke up I had two setons. One was through my vag. I did not know I had one there (though in hindsight I should have). The surgeon saw it while doing the examination under anesthesia. I expect if you had one your surgeon would have seen it during the seton placement. Unless it really showed up in the last five days.

He removed the seton in my vag after a few months, the other is still there, sigh, almost a year now.

I find that my fistula by my anus drains constantly, it can be mucus, blood, puss or poo when the d is bad. Because of where it is located the drainage can travel up by my girl bits and seem as though it is coming from there. Mostly I keep a small pad between my cheeks to catch the drainage. If I get stuff by my girl bits and the pad is clean then I know where it came from.

I have used medical foam pads, gauze and now little cotton makeup pads from the drug store- they are super cheap but must be changed more often.

Also if you are getting irritated skin you may want to pick up some calmoseptine.

The other big sign of a fistula that connects to your vag is passing gas there. It's hard to miss.

Good luck, I hope that you heal quickly.

-Barbara

 

[Danu]

Thank you guys for your responses. Barbara, that makes me feel better and it makes sense that he would have looked for other fistulas while I was under on monday. I'm going to call my CR surgeon first thing tomorrow morning o get his thoughts.

How did they place the seton in your vagina? I don't understand the anatomy of it. I'm going to have to do a little online searching.

 

[Sailorluna]

The fistula runs from my rectum to my vag so the seton went up the rectum, through the fistula out the vagina and then the two ends are tied together outside the body making a circle.

It was pretty upsetting to wake up with.

Its always a good idea to talk to the surgeon. I still see the surgeon 1-2 times a month almost a year later. You may want to ask how often he will be expecting you to come in. I was not expecting it.

 

[Danu]

That would be very upsetting. One is bad enough! And in the vag to boot. Thank you for your posts they have been really helpful. I didn't even know what a fistula was three weeks ago. This diesease is amazing, always throwing a curve ball.

 

[napster]

Hi Danu, I feel for you. I've had a pouch (let's just call it rectal) to "just outside the vagina" seton placed about 6 weeks ago. I agree with everything sailorluna said - from the incredibly upsetting part, to using cotton rounds and calmoseptine.

Out of curiosity, though, sailorluna: why do you see the surgeon 1-2 times/month after a year? My surgeon told me to come back in a year.

 

[Sailorluna]

Hi
My surgeon is not happy with how it is healing. My crohns is pretty active in the rectum. In April they replaced the seton and redebrided the fistula track making it bigger. Before that I had to have it drained 4 times. I went on Humira in December and the fistula drainage and pain are just now starting to settle down.

I saw him last week and he said it was "bridging" and used silver nitrate back there. I should have asked what the deal was but he had a "shadow" and it always makes me feel weird when they are in the room watching.

You don't go back for a year! You must have healed nicely. Is the seton still in?

 

[Danu]

So I talked to my CR surgeon today and he said that it does sound like a vaginal fistula due to the stool/yellow mucous/gas (sorry for the horrid detail, just painting a picture, ha). He says that when he was working on my anal/rectal fistula that it was shallow and more to the back, so he wasn't looking for any vaginal fistulas. Plus, the anal/rectal fistula seemed relatively straight forward I think.

He wants me to get in touch with my GI Doctor tomorrow and talk to him about possibly switching from Asacol to Remicade. He says that I need to discuss with my GI Doctor, but with the symptoms I've been having it seems I am leaning more towards crohn's colitis rather than ulcerative colitis.

*good news* he says that he doesn't set setons for vaginal fistulas and that remicade should treat it (I'm not sure what others experience is with this, but I was relieved because having a vaginal seton sounds terrible).

I have an appointment with the CR surgeon next Tuesday to follow-up. Then an appointment with my GI Dr next Thursday. Hopefully we will get this all situated. Bummer part is that I just ordered a three month supply of Asacol from Med Co. Shoot!

Sailor, napster, grumble, and ipinky, thank you so much for your input. I'm so glad this forum exists. Really helps to have other people to relate to with these horrible issues. I'll keep you all posted.

 

[napster]

Danu - Sounds like you've got a decent plan of action going for you. I really hope the remicade works for you. Sounds like it was found early enough for meds to work - yay! And, so glad to hear you can avoid a seton. None of my doctors mentioned using remi for my fistula, but I know others who have given it a try.

Sailor, I just had my seton placed in early June. My CR surgeon said there's absolutely no chance - she has 100% certainty - that this fistula won't heal by itself or w/the seton in, etc. (something about how it angles & branches, idk). So, I guess since I decided against pouch removal surgery, which is the only option I have other than pouch redo which is a definite no, there's no reason to see her unless I have trouble with the fistula/seton. Mine never abscesses and hasn't for over a year now, even without the seton.

Why do they make the fistula track bigger, or is that a result of the debriding? I'm interested in the "bridging" also. Will have to look into that.

Best of luck with your situation, Danu!

 

[Danu]

Update! Had my follow up appts with the CR surgeon and my GI doctor this week. Everything is under control with my UC symptoms (no diahrea, joint pain, cramping) and the incision made where the seton was placed is healed. I feel awesome right now and my GI is dec my prednisone to 10 mg/day. CR surgeon says the fistula looked well. Very pleased!

I spoke to the GI about remicade. Since I'm feeling so well and haven't had any more issues with stool in the vaginal area we decided to give the disease some time before starting any infusion treatments, with the hope that maybe I won't need it. We shall see! Got the TB and hep B tests today just in case I need to start rem in the future.

Outlook on life: positive! Been practicing yoga and am considering a bike ride tomorrow (yes, the seton feels that good). I have also decided that calmoseptine cream gives one the feeling of butt nirvana. A must for Ppl with setons!

 

[Sailorluna]

Danu, So happy to hear this! Great news.

 

[Sailorluna]

Napster - asked the cr about the Bridging. He said the outside opening of the fistula was trying to heal shut even with the seton.

 

[Neko76]

Hi,

I'm glad to hear that things seem to be settling and I really hope they stay that way so that you and hubby can carry on with your family plans. I just want to say that getting pregnant with fistula can turn out to be a nightmare so make sure that you have all your docs on board when you do decide to go ahead with baby plans. I'm not trying to be negative, it's just that I went through pregnancy last year with 4-6 active fistulas (Sawyer was a surprise... I certainly wouldn't have planned him with crazy active dosease). Anyways I ended up having to have 3 drainage under anesthetic while pregnant and as I got bigger...the pressure of the baby kept closing off tracts and creating more assesses. Anyways I just wanted to share that....but then again at the end the nightmare I do have fabulous 10 month old

All the best,


Kat

 

[Parks5]

Need advice please. Scheduled for seton placement December 22nd. Start student teaching January 5th. Should I wait for seton placement until student teaching is done in mid April? I am very freaked out with the thought of the seton coming out the anus.

 

[Avw]

I wouldn't postpone, it is there to keep the wound from closing and abscessing again. It really should help. It's way better than getting surgically drained every week. Hope all goes well!