What is the usul process of dealing with a RV fistula?
Just 3 weeks out from pouch pexy surgery now this!!!
Original Post
Replies sorted oldest to newest
I am looking forward to someone responding to your question. I am suspecting I may have a RV fistula although there is no discharge that I can tell but there is air released from the vagina. Also, my vagina is always burning. Sexual relations are impossible. I have an appointment coming up and I hope I'm told I'm mistaken.
What are your symptoms? I am also curious about potential treatment.
What are your symptoms? I am also curious about potential treatment.
It's actually my daughter. The short version:
Shortly after her 3step jpouch surgery (2011) she started having anal pain. Some scans suggested a sinus at the anastamosis but it couldn't be found on exam. She had open surgery a year after her initial ones (2012 for ileo) and there was a mass by her anus but no leak could be found (in 2013). So we hoped the mass was the cause of the pain. Not the case.
Then she developed a full-thickness prolaps (temp ileo march 2014). Another open surgery and a pouch pexy was done on june 20th and the surgeon was possibly going to redo the anastamosis while he was in there given all her pain. However once again, it looked good and there was no sign of any leak. So, once again the surgeon decided to leave it to spare the 15% chance of pouch failure, incontinence, etc.
About a week ago she started feeling very poorly. However she had fluid build up behind her incision and had to have it opened and drained. We are now packing that. Thought just maybe that was causing all her misery but not very convinced. She just felt something wasn't right. About 5 days ago she said she was having pain inside her anus. Then she started having air come out her vagina when she would empty the mucus and small amount of stool from her pouch (she has a loop ileostomy but it has retracted so some stool gets through). Then yesterday she had stool and mucus come out her vagina.
It seems there really was something there that showed up on the scans but the surgeon and GI just could not find it on many instances. Now there is a question if she really has crohns. We will know more hopefully this week and for sure the end of the month when she has an EUA.
Sorry this got so long, you are all probably happy I chose the short version!!
I'm curious to know people's experiences with how long it took to heal, what actually was tried and what worked.
Shortly after her 3step jpouch surgery (2011) she started having anal pain. Some scans suggested a sinus at the anastamosis but it couldn't be found on exam. She had open surgery a year after her initial ones (2012 for ileo) and there was a mass by her anus but no leak could be found (in 2013). So we hoped the mass was the cause of the pain. Not the case.
Then she developed a full-thickness prolaps (temp ileo march 2014). Another open surgery and a pouch pexy was done on june 20th and the surgeon was possibly going to redo the anastamosis while he was in there given all her pain. However once again, it looked good and there was no sign of any leak. So, once again the surgeon decided to leave it to spare the 15% chance of pouch failure, incontinence, etc.
About a week ago she started feeling very poorly. However she had fluid build up behind her incision and had to have it opened and drained. We are now packing that. Thought just maybe that was causing all her misery but not very convinced. She just felt something wasn't right. About 5 days ago she said she was having pain inside her anus. Then she started having air come out her vagina when she would empty the mucus and small amount of stool from her pouch (she has a loop ileostomy but it has retracted so some stool gets through). Then yesterday she had stool and mucus come out her vagina.
It seems there really was something there that showed up on the scans but the surgeon and GI just could not find it on many instances. Now there is a question if she really has crohns. We will know more hopefully this week and for sure the end of the month when she has an EUA.
Sorry this got so long, you are all probably happy I chose the short version!!
I'm curious to know people's experiences with how long it took to heal, what actually was tried and what worked.
There are lots of different options for RV fistulas but I will be honest up front: they are a MASSIVE pain. They love to recur and are notoriously difficult to treat. Having said that, many more options are becoming available, so there is hope.
Sometimes a Seton drain is inserted, sometimes medication is used to see if that will work. There are "small" repairs involving mesh repairs or "plugs"; more extensive surgical repairs are varied. (I've just had a pouch advancement done to deal with a very troublesome RV fistula.)
The first thing is to find the bugger; they can be difficult. A treatment plan can then be developed. The only effective test for me was when they pushed tinted (radioactive?) liquid in through the anus, and then traced it with a CT as it leaked through the fistula. None of the other tests before that (sigmoid, water test, CT & MRI scans, etc.) found mine.
Just a couple of thoughts to keep in mind: some fistulas can be quite benign, so don't panic. Some do spontaneously heal. The presence of a fistula does NOT necessarily mean Crohn's and does NOT necessarily mean more will develop. Many of the new treatments (such as the mesh with temp ileo) are having very high success rates, much higher than past treatments. So there is hope.
But first things first: get a proper diagnosis. Then begin investigating options.
There are lots of people on this site with experience with RV fistulas, so hopefully others will chime in as well. But I'm also happy to try and answer questions if you have more.
Best,
Gin
Sometimes a Seton drain is inserted, sometimes medication is used to see if that will work. There are "small" repairs involving mesh repairs or "plugs"; more extensive surgical repairs are varied. (I've just had a pouch advancement done to deal with a very troublesome RV fistula.)
The first thing is to find the bugger; they can be difficult. A treatment plan can then be developed. The only effective test for me was when they pushed tinted (radioactive?) liquid in through the anus, and then traced it with a CT as it leaked through the fistula. None of the other tests before that (sigmoid, water test, CT & MRI scans, etc.) found mine.
Just a couple of thoughts to keep in mind: some fistulas can be quite benign, so don't panic. Some do spontaneously heal. The presence of a fistula does NOT necessarily mean Crohn's and does NOT necessarily mean more will develop. Many of the new treatments (such as the mesh with temp ileo) are having very high success rates, much higher than past treatments. So there is hope.
But first things first: get a proper diagnosis. Then begin investigating options.
There are lots of people on this site with experience with RV fistulas, so hopefully others will chime in as well. But I'm also happy to try and answer questions if you have more.
Best,
Gin
Thanks for the replies. We have (I beleive) been trying to find that bugger for 2 years! She had lots of anal pain since 3 months after initial takedown, but they kept telling us she had pelvic floor dysfunction. (even went to PFD program which didn't help the pain) The first MRI she had for this was "suspicious", but not confirming and they couldnt find it on exam. She had several EUAs and tests (plus 3 open surgeries) in the past 2 years and they couldn't find it. She had one MRI that said there were THREE there but they couldn't visulize any. She was supposed to have her anastamosis or whole pouch redone twice now and each time the surgeon said it looked so good he didn't want to do it if there wasn't a clear reason. NOW there is and she just had a pouch pexy so not sure if that would have to be redone as well if they tried the redo approach to fix it. I am convinced it is the 2 open operations and all the "searching" from the inside that made it angry enough to finall show it's ugly head. My daughter has had problem after problem since having her pouch surgeries. Like others have said, she felt great after having her colon removed but since having the pouch created it has been a nightmare.
Interestingly, she has had a loop ileostomy since March and 3 weeks after pexy surgery which she had on June 20, it becomes apparent. If it wasn't for the stool leaking through (her stoma retracted so some stool is getting through), she would probably just think it was normal vaginal discharge. It has obviously been VERY elusive!
We are very fortunate to have the best surgeons and GI's working with her but it has already been 8 surgeries, numerous procedures and more to come. She is so atypical (always has been) and continues to stump the most intelligent and experienced doctors. I have a feeling she won't be very patient with this and if it doesn't clear up quickly, will want to get rid of her pouch and go to permanent ileo.
Interestingly, she has had a loop ileostomy since March and 3 weeks after pexy surgery which she had on June 20, it becomes apparent. If it wasn't for the stool leaking through (her stoma retracted so some stool is getting through), she would probably just think it was normal vaginal discharge. It has obviously been VERY elusive!
We are very fortunate to have the best surgeons and GI's working with her but it has already been 8 surgeries, numerous procedures and more to come. She is so atypical (always has been) and continues to stump the most intelligent and experienced doctors. I have a feeling she won't be very patient with this and if it doesn't clear up quickly, will want to get rid of her pouch and go to permanent ileo.
Ha! Not laughing at you or your daughter's experience, just relating... When I moved to the Netherlands, my doc in Canada wrote, in red letters across my records: "If something weird is going to happen, it is going to happen to this patient." Quite the reputation, eh? 
After working with me for a year, my surgeon here said, "Your surgeon in Canada was RIGHT."
Here's the thing: an end ileo will solve, permanently, the fistula issue. However, there are a lot things to weigh into that decision -- no recommendations here as to which course of action to take, because everyone and every situation is different. Just: do your research well!
One other thing: there are a few women on this site who have "active" fistulas who live with them quite well. In their cases, the fistulas are very small, not active every day, and can be dealt with through diet (thickening foods) and such. They honestly don't deal with the merry-go-round of exhaustion and infection that others of us have dealt with... So there really are all kinds of different fistulas and different ways of (effectively) dealing with them.
Best,
Gin
After working with me for a year, my surgeon here said, "Your surgeon in Canada was RIGHT."Here's the thing: an end ileo will solve, permanently, the fistula issue. However, there are a lot things to weigh into that decision -- no recommendations here as to which course of action to take, because everyone and every situation is different. Just: do your research well!
One other thing: there are a few women on this site who have "active" fistulas who live with them quite well. In their cases, the fistulas are very small, not active every day, and can be dealt with through diet (thickening foods) and such. They honestly don't deal with the merry-go-round of exhaustion and infection that others of us have dealt with... So there really are all kinds of different fistulas and different ways of (effectively) dealing with them.
Best,
Gin
Had a gastrograffin enema woth xray and it did not show the fistula. However she continues to have air pass through her vagina every time she goes to the bathroom. We believe this was what has been causing her anal pain for two years.
Him did you have that test done? What about an EUA to look for it?
Him did you have that test done? What about an EUA to look for it?
So sorry to hear about your daughter's situation. Poor thing (and you!)
I've had a pouch-vaginal fistula for 3+ years now. It originates at the dentate line, and exits just outside the vag. opening.
It became known when it abscessed, although I was quite sick for years before that (fevers, headaches, flu-like). I do not recall anal pain with my fistula. I do recall air passing through, however.
The fistulas did not show up on a CT scan, however, they did show up on MRI which was only done due to the horrendous pain and swelling from the abscess. I did not have any of those other tests.
Cleveland Clinic (Shen) treated it with antibiotics and doxycycline shots, all to no avail, so he sent me to CR surgeon there.
She did a EUA and was able to locate the fistula's origination and insert a seton, which has been there for 2+ years now. Her recommendation was to redo the pouch, or go to end ileo, but she also said there was still no guarantee that the fistula would be gone with either option.
So, I'm one of those who has chosen to live with the seton for the time being, perhaps forever - I have not experienced infections and very little pain due to the fistula. 2 years later,there is typically very little discharge; discharge and air increases if I "hold" my BMs too long or eat seriously gaseous foods. I consider myself "fortunate" for having a relatively behaved fistula
I do toy with the idea of going to an end ileo, but my jpouch is functioning quite acceptably right now.
The seton creates no problems EXCEPT for making marital relations difficult/impossible, due to the seton's location. This, of course, is a biggie, particularly for younger women. I was told, however, that relations will not harm the fistula.
I hope you and your daughter find answers soon.
I've had a pouch-vaginal fistula for 3+ years now. It originates at the dentate line, and exits just outside the vag. opening.
It became known when it abscessed, although I was quite sick for years before that (fevers, headaches, flu-like). I do not recall anal pain with my fistula. I do recall air passing through, however.
The fistulas did not show up on a CT scan, however, they did show up on MRI which was only done due to the horrendous pain and swelling from the abscess. I did not have any of those other tests.
Cleveland Clinic (Shen) treated it with antibiotics and doxycycline shots, all to no avail, so he sent me to CR surgeon there.
She did a EUA and was able to locate the fistula's origination and insert a seton, which has been there for 2+ years now. Her recommendation was to redo the pouch, or go to end ileo, but she also said there was still no guarantee that the fistula would be gone with either option.
So, I'm one of those who has chosen to live with the seton for the time being, perhaps forever - I have not experienced infections and very little pain due to the fistula. 2 years later,there is typically very little discharge; discharge and air increases if I "hold" my BMs too long or eat seriously gaseous foods. I consider myself "fortunate" for having a relatively behaved fistula
I do toy with the idea of going to an end ileo, but my jpouch is functioning quite acceptably right now.
The seton creates no problems EXCEPT for making marital relations difficult/impossible, due to the seton's location. This, of course, is a biggie, particularly for younger women. I was told, however, that relations will not harm the fistula.
I hope you and your daughter find answers soon.
Kelsie,
I am another one with a RV fistula. My pouch is now 18 years old and my fistula is 8 years old. I keep the fistula because my pouch is perfect (besides the fistula) and I don't want to mess with that. I don't have a seton and my fistula has remained the same since it first reared it's ugly head. I get discharge if my stool is particularly runny or if I am holding it in for a long time. And I do have air pass through my vagina. I've gotten quite used to it actually and have to say that I am otherwise very healthy and happy.
Let me know if you have any questions for me.
C-jay
I am another one with a RV fistula. My pouch is now 18 years old and my fistula is 8 years old. I keep the fistula because my pouch is perfect (besides the fistula) and I don't want to mess with that. I don't have a seton and my fistula has remained the same since it first reared it's ugly head. I get discharge if my stool is particularly runny or if I am holding it in for a long time. And I do have air pass through my vagina. I've gotten quite used to it actually and have to say that I am otherwise very healthy and happy.
Let me know if you have any questions for me.
C-jay
I hate fistulas! Have I mentioned this enough?! I agree with the posts above that the fistulas can be different for every woman and handled for a long time. Mine showed up in 2001 and were not that big a deal for a while. They were found in the OR, with the blue dye. Mine went from the staple line out to the labia (in two tracks). I had setons 3 times and the last round of setons (yes, plural) were in for 3+ years. I did the glue plug (worked for 4 months) and another procedure to try to pull tissue over the opening (lasted a few months too). It all landed me with setons for a long time and Flagyl/Cipro when it got inflamed. In 2012 I did Remicade (proven to close fistula holes) and I was doing awesome! But that too didn't last.
I loved my sitz tub also to keep everything clean.
By the end, I had drainage daily. It used to be that I could thicken things up to help, but then nothing really seemed to help. It got so embarrassing!
In April, I had my jpouch and rectum removed and now have a perm. ileo. For the first time in over a decade nothing leaks out of my fistula holes! No setons! No antibiotics! Sex doesn't hurt again! Amazing grace!
I'm probably the worst of the worst. My fistulas (and insanely inflamed cuff) changed my diagnosis from colitis to Crohn's. I just hope and pray I don't end up with fistulas anywhere else. I did everything I could to put off the perm. ileo., but here I am. Even so, I lived a long time with my fistulas and did ok for many years.
Laura
I loved my sitz tub also to keep everything clean.
By the end, I had drainage daily. It used to be that I could thicken things up to help, but then nothing really seemed to help. It got so embarrassing!
In April, I had my jpouch and rectum removed and now have a perm. ileo. For the first time in over a decade nothing leaks out of my fistula holes! No setons! No antibiotics! Sex doesn't hurt again! Amazing grace!
I'm probably the worst of the worst. My fistulas (and insanely inflamed cuff) changed my diagnosis from colitis to Crohn's. I just hope and pray I don't end up with fistulas anywhere else. I did everything I could to put off the perm. ileo., but here I am. Even so, I lived a long time with my fistulas and did ok for many years.
Laura
If the fistula is inside the vagina does having sex hurt? What about if there is a seton in, is sex not only okay but is it painful?
Should tampons be used if there is no seton?
ANYONE have success with getting rid of a fistula permanently or at least long term?
I am so afraid of what this might mean for her!
Should tampons be used if there is no seton?
ANYONE have success with getting rid of a fistula permanently or at least long term?
I am so afraid of what this might mean for her!
Yes, sex was allowed with the setons (at least in my case). However, sex wasn't uncomfortable because of the setons, but because of any inflammation. Plus, I think at certain points having sex bumped things and made it all act up even more (the need for Flagyl or even my surgeon would open up the skin to let the pus drain even more).
Fistulas are so challenging to the patient and to the surgeons. I'm sorry that the doctors aren't sure where it is.
I did have chronic "pain in the butt". Turned out I had a 4cm mass next to my pouch/rectum. They used to call my inflammation "cuffitis", but then they changed it to just "Crohn's of the cuff" because there was no healthy tissue left. Pain was pretty bad. I did acupuncture and that really helped my pain.
Again, I'm so sorry that your daughter's case is stumping all the doctors. Hope you know some answers very soon.
Laura
Fistulas are so challenging to the patient and to the surgeons. I'm sorry that the doctors aren't sure where it is.
I did have chronic "pain in the butt". Turned out I had a 4cm mass next to my pouch/rectum. They used to call my inflammation "cuffitis", but then they changed it to just "Crohn's of the cuff" because there was no healthy tissue left. Pain was pretty bad. I did acupuncture and that really helped my pain.
Again, I'm so sorry that your daughter's case is stumping all the doctors. Hope you know some answers very soon.
Laura
My daughter also had a 4 cm mass by her pouch/anus!! They were hoping that is what was causing the pain but not so lucky.
What are they proposing to do about the mass? That can't be good.
I never had a Seton. Sex was allowed with the fistula and was not painful. EXCEPT when I had a raging yeast infection. The first couple of years this wasn't too often, but toward the end my fistula became quite large and I was on a constant roller coaster of yeast infections and UTIs. Hence the rather major surgery (pouch advancement) I've just had. I really couldn't live with the fistula any more.
Yes, many people have had success getting rid of fistulas. There are new surgical treatments which are proving quite promising. That is why I strongly suggest doing A LOT of research -- different treatments are used here in Europe, for instance, than in the States. But eventually they make their way around, and patients pushing for better care can be part of that process.
The mesh repair with diverting stoma which was not successful for me has proven to be successful in over 80% of cases with even complex fistulas. (I was the minority, alas.) That is a better percentage than most of the "standard" treatments, which tend to run in the 50-60% range. So there really is hope.
This surgery I've just had done has also been successful, which is why I chanced it. Too soon to tell for me, but no symptoms yet and the surgeon was very pleased with the procedure. So I am cautiously optimistic.
Of course, other existing problems will affect everything too.
I hope you can get some answers soon.
Gin
I never had a Seton. Sex was allowed with the fistula and was not painful. EXCEPT when I had a raging yeast infection. The first couple of years this wasn't too often, but toward the end my fistula became quite large and I was on a constant roller coaster of yeast infections and UTIs. Hence the rather major surgery (pouch advancement) I've just had. I really couldn't live with the fistula any more.
Yes, many people have had success getting rid of fistulas. There are new surgical treatments which are proving quite promising. That is why I strongly suggest doing A LOT of research -- different treatments are used here in Europe, for instance, than in the States. But eventually they make their way around, and patients pushing for better care can be part of that process.
The mesh repair with diverting stoma which was not successful for me has proven to be successful in over 80% of cases with even complex fistulas. (I was the minority, alas.) That is a better percentage than most of the "standard" treatments, which tend to run in the 50-60% range. So there really is hope.
This surgery I've just had done has also been successful, which is why I chanced it. Too soon to tell for me, but no symptoms yet and the surgeon was very pleased with the procedure. So I am cautiously optimistic.
Of course, other existing problems will affect everything too.
I hope you can get some answers soon.
Gin
I dont think they like to use the mesh here as it has caused a lot of problems. Pouch advancement was already supposed to be done in the past three open surgeries but because it "looked good", it wasn't done. Have to wonder how it looks now!!!
What other types of things are done there that aren't done here?
What other types of things are done there that aren't done here?
Yes, I've heard that about the mesh repair but the one the NA doctors are referring to is different than how it is done here. Different mesh, different technique. Only introduced in the past three years (I was one of the first 10 women to have it done), so not the same as the one performed in NA for the past several years. Unfortunately, I think many NA doctors assume they are the same as soon as they hear the word "mesh".
They don't do Setons here at all, for a variety of reasons. The gracilis muscle flap repair was also pioneered here. They also sometimes do a muscle flap repair using the rectus abdominus, and sometimes a muscle from around the vulva. The pouch advancement technique for fistulas is very similar to a treatment done for rectal cancer patients. It actually isn't done very often here, but has had great success when done.
They are much more liberal with use of that anti-scar tissue stuff (can't remember what it is called) and are experimenting with a plasma "glue" as well.
What exactly "looked good"? The pouch or the fistula?? Because if the pouch looks good, that doesn't necessarily have any bearing on the fistula, especially if it is really low.
At the end of the day, fistulas are tricky, nasty little buggers. I wouldn't wish one on anybody.
Gin
They don't do Setons here at all, for a variety of reasons. The gracilis muscle flap repair was also pioneered here. They also sometimes do a muscle flap repair using the rectus abdominus, and sometimes a muscle from around the vulva. The pouch advancement technique for fistulas is very similar to a treatment done for rectal cancer patients. It actually isn't done very often here, but has had great success when done.
They are much more liberal with use of that anti-scar tissue stuff (can't remember what it is called) and are experimenting with a plasma "glue" as well.
What exactly "looked good"? The pouch or the fistula?? Because if the pouch looks good, that doesn't necessarily have any bearing on the fistula, especially if it is really low.
At the end of the day, fistulas are tricky, nasty little buggers. I wouldn't wish one on anybody.
Gin
I developed an RV fistula just a couple of months after my first takedown. It started with gas pains that I would get in the middle of the night that I would have to contort myself into weird positions to release, and then when they did pass...it wasn't from the bum. Stool started passing through the fistula just a couple weeks later, though I had two exams and both my surgeon and an OB/GYN couldn't find anything. I was miserable and begged my surgeon to do an exam under anesthesia, which is when he found it. What he elected to do was another surgery to re-divert me back to a loop ileostomy while I began Remicade treatments for 8 months. After 8 months, most of the fistula had disappeared, but a small surgical repair was needed using a piece of the gracilis muscle. They did a second takedown about three months after that surgery, and I've been on maintenance medication with Humira and 6MP ever since. I haven't had a recurrence of it thus far (knock on wood and anything else!)
Hope your daughter finds a solution for hers very soon.
Hope your daughter finds a solution for hers very soon.
I also have a RV fistula. I started noticing the passing of gas through my vagina about this time last year and had some random leakage of stool. But it went away so i let it go. When it came back I went to my GI doctor and he said it was most likely a fistula. It was only my second time seeing him and he actually recommended i go back to Penn in Philly where i had my j-pouch. After a pouchoscopy, MRI and two EUA's they finally found mine. I had a draining seton put in, then they tried the LIFT procedure,it worked for about 3 days and then the leaking started up again.then put a draining seton back in. I go to my surgeon on the 20th to decide if he wants to do a pouch advancement, or some kind of flap. Either way i'm back to a temp ilieo.
Im hopeful that whatever we decide works! They really are a nuisance! I also can have sex with my seton. It's not always comfortable though. I also feel like tampons tend to not stay in as well, but i still wear them! Hope they get this figured out for you and your daughter soon!
GinLyn.... was the pouch advancement a tough surgery?
Im hopeful that whatever we decide works! They really are a nuisance! I also can have sex with my seton. It's not always comfortable though. I also feel like tampons tend to not stay in as well, but i still wear them! Hope they get this figured out for you and your daughter soon!
GinLyn.... was the pouch advancement a tough surgery?
So yesterday my gynecologist found a little (2mm) hole near my perineum. I had previously spoken to my surgeon about passing gas through my vagina, and he said it could be a fistula and to keep an eye on it, to tell him ASAP if stool started coming from it.
I'm going to see my surgeon on Sept 8th and I'm trying to be upbeat, though I am very nervous. What are the chances it'll heal itself? What should I ask him?
Thank you,
Katie
I'm going to see my surgeon on Sept 8th and I'm trying to be upbeat, though I am very nervous. What are the chances it'll heal itself? What should I ask him?
Thank you,
Katie