I have a seton, and it's been in for a few months now. I'm thinking it'll be in much longer. I'd like to hear other successful stories. I always wonder if we're at a disadvantage for this surgery, since we move our bowels so much more often than a regular person?

what is the LIFT procedure?

If you google LIFT procedure for fistula it will explain it a little better but my surgeon basically said it doesnt cut through the inner and outer muscles (risking incotenence ) but between the two muscles. Seems like its worth a try! He said if it doesn't work you just still have a fistula. Rachel- I've had mine for about 2 months and it is quite annoying! I feel like I would like to try SOMETHING to to fix it!!

I've had a fistula now for 7 months, and a seton for 4 months. The seton is livable, but annoying. He said the inflammation is still present in mine, so no go for anything but the seton currently. Mine is a very common fistula that doesn't involve my pouch, it's intrasphincteric. The seton stops the major pain of it, but I always wear a 2X2, as it discharges a wee bit of mucus. Sometimes it'll bleed after a BM, too, but only then. It's currently not HORRIBLE, just annoying. *sigh*

I've had fistulas with setons for going on 2 years. ( currently 4 setons) My Dr. said many people have setons in place permanently - for the rest of their lives - and hints that I should get used to it.

Jpoucher4life, what type of fistula do you have? Pouch Vaginal Fistula, or another type? I ask because I do know of a woman who had a LIFT done a couple years ago, and is doing great; however, she did not have an PVF fistula. I will attempt to have her contact you if you are interested. However, ...

My surgeon (Cleveland Clinic) does not recommend a LIFT for my PVF, she said she doesn’t like the lift for PVFs because it opens up a lot of area/tissue and if it doesn’t work, you’re worse out. She likes the LIFT in many situations, however, in PVFs she sees problems with the LIFT when it doesn’t heal and you get this all opened up and you have an open cavity, and a lot of the times it’s the beginning of a stoma on the outside if it doesn’t heal. I'm just reporting one surgeon's opinion!

Did you ask your surgeon if you could contact his patients who've had the LIFT? It could be very helpful to talk with them directly - find out their circumstances, how similar to yours, and other details.

I so empathize with you - I've had my fistula for 2-1/2 yrs, a seton in for a year, and it looks like it may be in for quite a bit longer (perhaps even - gak! forever??) If asked what are the consequences of having it removed and just living with it that way, and my surgeon said you WILL abscess, it's just a matter of when... Sigh. NOT what I wanted to hear.

Best of luck, keep up posted on what you decide to do!

Yeah, my surgeon said, "Some people have dentures... you have a seton," when I got pouty faced about it. Which is his way of saying "Get used to it." And yeah, I'd rather a seton over dentures, honestly, but geez. Once a butt girl, always a butt girl!

Thanks for your response n/a, my fistula is not a PVF. It is from where my pouch is stapled to my perianal area, although if we hadn't caught it when we did it probably would have progressed to one! That would be great if she would like to contact me or vice versa if you give me her contact info! I seriously can't imagine having one for life :/ But seems like they come up with new procedures all the time so I guess that's some hope!!

Jpoucher, I sent you a PM...

I had the LIFT procedure after having the seton for 18 months. I would have done it sooner but my surgeon didn't do it until after I had the seton all that time. I am really happy I did it and have had no problems since. I am happy to PM or email with anyone who is wanting to talk to someone who has been down that road.

3 stage J pouch surgery in 1990
C-section 1995
strictures, setons, LIFT...can't remember when but healed well from all....

PM me! I want to know there *could* be an end to this.

There is also a new technique for RV fistulas currently being worked on here in the Netherlands. I've written about it before, so if you search for my earlier posts you'll find a description. I was one of the first 10 women to have it done. So far the full success rate (complete closure, obviously it does not prevent new ones forming) is running at 80%. This is better than the estimated 50-60% success rate for the methods (excluding the LIFT, I don't know stats for that) currently used in the US and Canada.

It does require two surgeries and a temp ileo, so that is a turn-off to some (understandably), but if the RV (or PV) fistula is extreme, it is definitely worth a shot. In my case my fistula was draining heavily on a daily basis and I had lived with a permanent yeast infection for about 6 months. Prior treatments had no effect whatsoever.

Hope you find relief!

Gin

Hi.. I have a seton in place to control a perianal abscess that kept filling and discharging.. My surgeon put a double seton and tied it in June.. All has been good since I would be fine with keeping it in.It seems to be a lot more loose and I'm thinking it is coming undone is that possible? I will call tomorrow but am getting a little worried and would appreciate some feed back please!

Well, I'm going in next week for exploratory on the fistulas. The doctor said he is leaning toward a plug, but he isn't ruling out other procedures once he gets in there and sees what's up.

He talked about lowering the cuff into the anal canal past the fistula opening, but that was a distant possibility.

Luckily, my fistulas are not through to the pouch, but one into the anal canal, and the rest in the right buttock.

I basically gave him carte blanche to do whatever he sees fit, so I don't know exactly what will be going on when I wake up. Could be I will walk out after the surgery with plugs, or could be I will be admitted for a few days while I recover from major invasive exploratory excursion through the caverns of my fistula tracks.

One way or the other, I hope it will be the end of fistulas for me. They are a pain in the ass. Pardon the pun.



.