Share Facebook



11-17-2008, 09:05 PM   #1
wallysolar
 
rectovaginal fistulas

Hi,
I have had CD for 20 years. I currently have 2 rectovaginal fistulas that are giving me grief (gas and stool vaginally). I would love to hear from people who have had surgery to fix these. What procedure did they use? How difficult is the surgery? Did you have any complications? How long were you off work from the surgery? Would you do it again? Thanks for any help you can send my way! -----Wally
11-17-2008, 09:20 PM   #2
TammySue62
Senior Member
 
TammySue62's Avatar
 
Join Date: Nov 2006
Location: hamilton, Ontario

My Support Groups:
The surgery is called seatons (sp?) and no it did not help me.

They came back with vegence !

I still have 3 that just will not go away nor stop draining. they are a real pain
in the butt. Literally speaking thank god we have 2 butt cheeks cause I cant sit on my right side.

There have been a few posts about fistulas. Check them out for more info
__________________
TAMMY
------------------------

HAVE HAD CROHN'S DISEASE FOR 30 YEARS AND STILL GOIN
11-17-2008, 09:33 PM   #3
wallysolar
 
I already had cetons. They stopped the infections but didn't stop the problem. They are going to do a flap advancement or fibrin glue. Do you know about those?
11-17-2008, 11:52 PM   #4
kello82
Senior Member
 
kello82's Avatar
 
Join Date: Nov 2008
hey there wally
i have a rectovaginal fistula that has been coming and going for about 2 years. it seem like sometimes it heals up and i have no stool/ gas passing thru, and then it will just reopen up randomly.
fortunatly, it has never gotten infected and need a seton or other surgery.
i havent heard of a flap advancement, whats that? but i have had the fibrin glue for fistulas in my butt. its kind of this jello-ish material that they inject into the opening, and then it slowly wears away over a period of time, giving your body a chance to replace it with scar tissue. kinda like sealing the wound from the inside out. i had this done when my fistulas were still infected though, so it didnt work properly and now im back to having setons and penrose drains for the time. but keep in mind that this was for fistulas in my butt, not the rectovaginal one.
im not sure if this is a good or bad idea, but when i know that the fistula is open, i wear a tampon all the time, even when not having my period. it feels cleaner than just having the nasty stuff leak out and also helps hold in any gas that wants to come out. so embarrasing
hope this helps!
11-21-2008, 08:06 PM   #5
TammySue62
Senior Member
 
TammySue62's Avatar
 
Join Date: Nov 2006
Location: hamilton, Ontario

My Support Groups:
wallysolar said:
I already had cetons. They stopped the infections but didn't stop the problem. They are going to do a flap advancement or fibrin glue. Do you know about those?

No fraid not
11-21-2008, 08:13 PM   #6
TammySue62
Senior Member
 
TammySue62's Avatar
 
Join Date: Nov 2006
Location: hamilton, Ontario

My Support Groups:
kello82 said:
hey there wally
i have a rectovaginal fistula that has been coming and going for about 2 years. it seem like sometimes it heals up and i have no stool/ gas passing thru, and then it will just reopen up randomly.
fortunatly, it has never gotten infected and need a seton or other surgery.
i havent heard of a flap advancement, whats that? but i have had the fibrin glue for fistulas in my butt. its kind of this jello-ish material that they inject into the opening, and then it slowly wears away over a period of time, giving your body a chance to replace it with scar tissue. kinda like sealing the wound from the inside out. i had this done when my fistulas were still infected though, so it didnt work properly and now im back to having setons and penrose drains for the time. but keep in mind that this was for fistulas in my butt, not the rectovaginal one.
im not sure if this is a good or bad idea, but when i know that the fistula is open, i wear a tampon all the time, even when not having my period. it feels cleaner than just having the nasty stuff leak out and also helps hold in any gas that wants to come out. so embarrasing
hope this helps!

I dont think that wearing a tampon 24/7 would be a good move. I had to wear a really thick thick pad and then some nights a diaper.You have to let the air get at ur butt sometimes.Or even using a folded up hankie does the trick for me. They also come in handy for those most embarrassing moments when there is no bathroom in sight at all.
11-25-2008, 07:10 PM   #7
wallysolar
 
Anyone else have any information?
11-30-2008, 12:40 AM   #8
ErinDF
Senior Member
 
Join Date: Aug 2008
Hi,

I also have recto-vaginal fistulas that have been acting up for about a year and a half. I had a seton placement which didn't really do anything. Due to the fact that my disease was really active in many ways, I currently have a temporary ileostomy to let the whole area heal, which hopefully will include my fistulas (they're already getting better and its only been five weeks). Not sure about other surgical options, but I know some of the more powerful drugs like Remicaide are supposed to also target fistulas. It didn't work more me (I'm now on Tysabri) but I think its supposed to work for a pretty good majority of patients.

Not much info there, but that's my experience. I can't wait for them to hopefully heal completely. they are the very definition of a pain in the butt...and other areas!
07-11-2009, 10:01 PM   #9
kansas
New Member
 
Join Date: Jul 2009
I am thinking that I have a fistula and not just an abscess because of the time it has taken to drain (2 weeks) and the similarities in fluid color when I go to the bathroom. Wearing a maxi pad when your a dude is embarrassing by the way. I will go in on Tues to get a CT and Fistula gram, but I think I already know the answer which pushes me into Chrones not Ulcerative Colitis diagnosis. Can anyone shed some light on what I am up against here surgery or medication wise, will they come back and will I ever sit in comfort again? Thanks
07-16-2009, 03:14 AM   #10
kello82
Senior Member
 
kello82's Avatar
 
Join Date: Nov 2008
hey kansas
first off, maxi pads are embarrasing for girls too lol. they arent made to fit your butt....they are supposed to be placed elsewhere. but really, i can see how it would be that much harder for a guy. it sucks all around

maybe you have posted this elsewhere, but what are the symptoms as far as the fistula? is there hole in you butt area? do you notice, erm, farts taking a detour? does it feel better now that its draining though? for me the worst thing about fistulas is before they open up and the swelling and pressure is just awful. once it opens there is so much relief, but still very painful.

ok as far as surgeries, theres a couple different things that they may do. if its shallow, they may just "scoop" it out for lack of better word. take out the skin where it is and then it will heal up with no open tract to worry about.
another possibility is the placement of something called a Seton. this is a little thread like string that they thread through the fist tract and through where it passes into the bowel and bring it out your rectum. if that makes sense? no cutting involved! the thread just goes in the fistula hole and then is brought through the "loop" that the tract causes. then its tied on the outside of your body. this helps to keep the tract open so that it doesnt close up with pus and infecty stuff in it. they want it to be a clean opening before any healing starts to occur, otherwise the infection will be trapped inside and youre back at square one, amke sense?
another small tool they use to drain is called a penrose drain. its just slightly more of a deal than a seton. it looks like a ziti noodle actually, long thin hollow tube made out of a really flexible rubber material. they may stick this into the fistula tract and then it must be stitched into place, 2 or 3 stitches at the surface to hold it in place. this helps to drain the tract if its a little more troublesome that a fistula requireing a seton.
medication wise-antibiotics are usually used if the fistula is infected. many of us on here have been on cipro and flagyl and they seem to help a lot. in severe cases it may require IV antibiotics...so its a possibility but not likely. oral meds are most likely.

unfortunately yes they can come back. it seems like once you get your first one its something that we kind of battle with when our disease is active.
but YES you will sit in comfort again! once the fistula is well managed it really isnt much bother. i still have 2 in fact, and a seton in one, but really forget that theyre there. no infection is in there, just the open tracts. so once its under control itll be so much better ok?

oh yeah also are you having fevers? thats always been an important indicatior for me when i knew that my bum was hiding a lot of infection in there.

well i guess your appt was yesterday, let us know how it went when you can!
good luck
07-16-2009, 08:42 AM   #11
My Butt Hurts
Squeals-a-lot!
 
My Butt Hurts's Avatar
 
Join Date: Aug 2007
kansas said:
Can anyone shed some light on what I am up against here surgery or medication wise? Thanks
My fistula drained slowly for quite a while after the surgeon poked a hole in it, but then it filled faster than it was draining, and was very painful. The cipro and flagyl wasn't working well enough, so I was scheduled for surgery. He was going to put drains in, but then it ended up being in a fatty area or something so he couldn't, and he ending up cutting it out. It was a painful recovery, but so worth it now because I am not in constant pain from it anymore. It either reappeared not too long after surgery, or another sprung up in its place, but I haven't had any problems with it since being on Humira or Remicade.

edit - Just noticed this title was rectovaginal. My surgery was for perianal.

Last edited by My Butt Hurts; 07-20-2009 at 05:11 PM.
07-16-2009, 09:45 AM   #12
Cookie
Senior Member
 
Cookie's Avatar
 
Join Date: Jan 2009
I had an advanced flap repair done on my fistula four years ago. Within a year, it was back. I have been back to see a different surgeon who agreed to re-try the surgery, but advised me that it had a 50/50 chance of success and could further complicate the situation, so i decided against it. I alternate between cipro and flagyl to keep infection at bay (I'm not sure that infection is the right word, but it seems to keep the abscess down, I guess), and they do a pretty good job. I have had a lot of trouble recently with abscess and pain when i don't take either anti-biotic, so i guess I am stuck with them and the glory of constantly dealing with yeast infections. I tried Remicade prior to my first surgery and it didn't help at all, but I have heard that others have had good luck with it. I may try Humira in the future, but for right now, I have just sort of accepted that it will always be there. It's not too much of an inconvenience, but I do get sick of constantly wearing a panty liner and it's not so great for the sex life, but since my Crohn's is sort of in remission right now, I know that things could be worse and I'd rather not rock the boat.
07-19-2009, 07:26 PM   #13
kansas
New Member
 
Join Date: Jul 2009
Thanks for the response guys. Seein the doctor tomorrow and gonna get a plan. let you all know.
07-20-2009, 05:48 PM   #14
kansas
New Member
 
Join Date: Jul 2009
Looks like the Doc thinks another round of Flagyl to get this fistula under control is the best thing to do along with the Humira. I am happy no surgery, hopefully this works itself out soon with the meds.

Wallysolar, Thanks for opening this thread awhile ago, hopefully you are feeling better

see ya guys
08-09-2009, 07:09 PM   #15
lotte26
Senior Member
 
lotte26's Avatar
 
Join Date: Aug 2009
Location: Wellington, New Zealand
Hi there!

I just joined - i have had crohns for 7 years, since i was 13. Since 15 i had a rectovaginal fistula - they didnt know what it was for 3 years (had surgeries trying to get rid of it as they thought it was an abscess. Anyway it got pretty mature and large. Finally when i found someone who knew what it was we decided to do a seton. It was temporary though as i did not want to have it in there for ever for obvious reasons! So after a month or so with the seton in it was drained properly enough that they cleaned it out with some chemicals (Cant remember what) But then they placed a fistula plug in and it started to work - after a few months it has gone. I havent had one for 2 years - but now (As my crohns has reignited with a vengence) I got one 3 months ago which they operated on again. Now i have another one and it is frigging annoying! But i would definately recommend a fistula plug.
02-11-2011, 10:04 AM   #16
Jessica462
New Member
 
Join Date: Feb 2011
I need some advice.. I am new to this forum because no one I know has never even heard of a seton or fistula for that matter... I have had it in place for almost a year now. Its driving me up a wall! I feel like my fistula will NEVER heal as long as its in. The more bm's I take I feel that some stool gets in there, it hurts on a daily basis! I can't stand it. In 1 week I will have my 3rd surgery and my surgeon doesn't even know why its happening. She swears I have crohns, but all the millions of tests came up negative! I need some advice or just some comforting words! Will I ever get this damn thing taken out of my butt? Has anyone ever had a seton that worked and healed the fistula and had it taken out?
~J.
02-12-2011, 11:30 AM   #17
endibd
Banned
 
Join Date: Feb 2011
I need some advice.. I am new to this forum because no one I know has never even heard of a seton or fistula for that matter... I have had it in place for almost a year now. Its driving me up a wall! I feel like my fistula will NEVER heal as long as its in. The more bm's I take I feel that some stool gets in there, it hurts on a daily basis! I can't stand it. In 1 week I will have my 3rd surgery and my surgeon doesn't even know why its happening. She swears I have crohns, but all the millions of tests came up negative! I need some advice or just some comforting words! Will I ever get this damn thing taken out of my butt? Has anyone ever had a seton that worked and healed the fistula and had it taken out?
~J.
I found the medications made things worse, particularly antibiotics ironically. I had them pretty bad. The worst enemy is loose stools and gas.

Here's what I did.

It's tough, but if you can find a way when you have a bowel movement to prevent stuff from getting through the hole (by putting pressure externally to plug up that exit while things are happening) that will probably go a long way to helping at least prevent further deterioration and help it stay cleaner, it might be able to start to heal itself.

I had 3 (have 3 scars now) that I healed myself.

This next part might sound weird but it worked for me. Depending where in your backside internally it's originating from, if you can eat foods that will plug you up just a little if you have the runs or loose stools, and are really careful about what you eat when, you might be able to prevent the more liquidy stuff and gas from leaking through. That goes a long way to allowing your body to be able to heal it.

I would have an empty stomach (well empty gut really), eat something that would plug me up a bit and sit in my colon, then eat my normal food. The result would be a bit of hard stool, but just a bit that was a little difficult to pass, but passing a little bit of hard and then the rest, was actually less detrimental to the fistula, because instead of a constant source of stool and gas and liquid that could leak through, the last mile was plugged and dry by a constipating food. Then during a bowel movement it would hurt a little bit, but that little stress during a bowel movement and whatever tearing might happen, instead of constantly having stool that could leak through allowed it time to heal itself free of new sources of infection and contamination.

Hard to give specific advice it depends where they originate from, internally. Usually it's somewhere in the last several inches though that is the source in your guts, due to the combination of ulceration and the stress of crapping.

Loose stools, gas and stuff passing through it or sitting in it is your enemy. Keeping things clean and stopping the passage of stuff will help. Ironically lots of medications and those liquid diets and antibiotics cause loose stools and gas.

You also need to consider the source, and pus, and if you start to block it off, where do things escape to. It's also important to treat the disease at the same time, and diet is great for that because it hits at the root of the disease.

It's a tough boat and I wish you luck. Use your mind and get creative. You are looking at 2 things you need to deal with. The physical aspect of the hole, and the biological aspect of the germs in the area. Dr's might give you antibiotics to try to kill of every organism in your body, but it usually doesn't kill everything off, and it does nothing to deal with the physical aspect. To them, that physical aspect involves them and a knife. But your body is powerful and it's made to heal itself, that's why we can make scar tissue.

Experiment and be careful.

Last edited by endibd; 02-12-2011 at 11:34 AM.
02-05-2014, 09:26 AM   #18
Jajabinks
Senior Member
 
Jajabinks's Avatar
 
Join Date: Jan 2014
Location: Westchester, New York

My Support Groups:
Hey endibd, got my first rectovaginal fistula and Im doing the things you say. I am scared. I really hope I don't end up with more fistulas. Anyway, my stool is solid and I eat healthy. There isn't much coming out of it right now (fistula). It is a bit higher up in my vagina and it feels like a ball with a tiny hole in the center. I just wonder what happens from here on out. I've heard of people needing blood transfusions and getting really bad infections. How does that happen? I don't want that for myself. I've been washing mine with Epsom salt water and keeping it clean. I'm considering a biologic drug now. Any advice for me? Should I see a colorectal surgeon?
__________________
Fish oil, turmeric powder, n-acetyl glucosamine, l-glutamine, slippery elm, marshmallow root, DGL, multivitamin, vitamin D. Crohns in terminal ileum. One semester left. Academics on hold thanks to painful Crohn's arthritis...
03-12-2016, 11:52 PM   #19
Miss Fit
 
Join Date: Mar 2016
Location: Australia, Australian Capital Territory, Australia
hi there Ladies. I had RVFs for 6 years & they hurt but then I stumbled into some info & tried to c if it helped & t pain stopped within a few days. I m in such a hurry to blog this that I wont wait to dig up al t details. In final trimester of pregnancy t body releases high level of Oestrial?Oestridial? that damps down t immune system since t foetus is half a foreign bodys genes. So I thought that may help. Had a great dr who was also a naturalpath & he agreed but insisted that I also be balanced for other hormones. I was using a HRT troche dissolved in t cheek. So I had a phantom type sort of pregnancy no stomach but great boobs. I cant tell u wot a miracle it was as t pain went & my vaginal healed. Wanted to tel t world but too sick w Crohns & also because this was an original finding, a one off, drs tend to think its coincidence but baby if u r in t pain I was in its worth trying. If it doesn't work within one month or even improve within 2 weeks wot hav u lost? when I m feeling a bit better I wil dig out details of researcher, amount 12 somethings, al t best
03-12-2016, 11:55 PM   #20
Miss Fit
 
Join Date: Mar 2016
Location: Australia, Australian Capital Territory, Australia
this happened about 2003 so mayb t rest of t world hav discovered it too by now. Hope so. so happy to hav discovered this forum. m now trying melatonin to reset circadian rhythms & to damp down inflammation (as reported in animal studies)
03-13-2016, 12:06 AM   #21
Miss Fit
 
Join Date: Mar 2016
Location: Australia, Australian Capital Territory, Australia
my specialist said surgery not an option cos difficult to heal in Crohns & likely to reoccur. I tried infliximab (redicade) 7 I got v good results bld tests wise but didn't heal fistulas. I stopped infusions cos I didn't like idea but now c13 years later hav infliximab every 8 wks & its great. relieves my arthritis too. After 6 years my RVF just spontaneously closed. I celebrated by buying a gstring & ditching t panty liners (sometimes i'd use 12 a day) Just a little constant leak but t discharge was high in gastric juices cos of rapid transist time & was digesting my vaginal lining. I liked panty liners cos had no plastic as I wanted as much air as poss to reach area. I hav had Crohns for over 30 years & an ileostomy for 10yrs. if I had known I wud hav had ileostomy 20 yrs earlier. T crippling pain is gone 7 I feel 30 again. Hang in there Ladies things can look up. I m v lucky to live in Australia where medical care is practically free.
03-13-2016, 12:11 AM   #22
Miss Fit
 
Join Date: Mar 2016
Location: Australia, Australian Capital Territory, Australia
sorry for my confusion. my now ex hubby wud refuse to let me open a window when I farted. he just told me to ignore it. Fanny farts r pretty funny, sometimes my labia wud even vibrate w t air pressure expelled which actually wasn't unpleasant. One has to grab one's pleasures & humour, black as it may b, where one can. if u ignore it noise 7 smell someone else thinks its someone else & no-one wud every think its ur fanny. Of course w ones anus one can clamp but not w one's vagina unless u hav Superwoman kegel muscles
03-13-2016, 12:21 AM   #23
Miss Fit
 
Join Date: Mar 2016
Location: Australia, Australian Capital Territory, Australia
oh dear another thought. Lots of ladies get diagnosed w a blocked Bartholin Cyst & get operated on when it is actually t start of a fistula tract. t Bartholin gland is either side of t labia & provides that v impt lubrication so intercourse doesn't cause friction pain (assuming ur lover knows how to arouse u or u r bold & brave enough to tell him wot u like) so for BC the surgeon cuts open t cyst(ie. Fistula tract) & stiches it open (called Marsupialisation cos its like a kangaroo pouch sort of not really) so t absess can drain. well after that my RVF started. So Sisters spread t word to each other & especially to Drs. women presenting w apparent Bartholin cysts really probably hav fistulas. & most women w Crohns r dx w "BC"
03-13-2016, 12:27 AM   #24
Miss Fit
 
Join Date: Mar 2016
Location: Australia, Australian Capital Territory, Australia
Hey endibd, got my first rectovaginal fistula and Im doing the things you say. I am scared. I really hope I don't end up with more fistulas. Anyway, my stool is solid and I eat healthy. There isn't much coming out of it right now (fistula). It is a bit higher up in my vagina and it feels like a ball with a tiny hole in the center. I just wonder what happens from here on out. I've heard of people needing blood transfusions and getting really bad infections. How does that happen? I don't want that for myself. I've been washing mine with Epsom salt water and keeping it clean. I'm considering a biologic drug now. Any advice for me? Should I see a colorectal surgeon?
Hey Jajabinks. Hope u hav started on t biologics. I hav redicade every 8 wks & its magic 4 getting rid of t arthritis
04-25-2016, 10:16 AM   #25
canary
 
canary's Avatar
 
Join Date: Jul 2014
Location: Seattle, Washington
Hello other rectovaginal-fistula-havers - I just had my first seton placed last week. I'm pretty resilient but the yeast infection I am dealing with feels like a gift directly from Satan himself. I realize yeast needed no invitation to this party - but the infection on the skin itself is the most painful part.

I don't want to play around with the Diflucan-Cipro arrhythmia interaction.

Have you found anything else that helps?

Thanks folks!
04-25-2016, 09:39 PM   #26
Polar bear
 
Join Date: Nov 2013

My Support Groups:
@Canary, this is from my personal experience and it worked for me. I scoop about a tablespoon of plain greek yogurt on a tissue paper then stuck it on my butt. After about 5 minutes I rinse it off with water. The coldness of the yogurt gives me relief from the stinging pain and itchiness, the live bacteria from the yogurt is supposed to attack the candida causing the yeast infection.
Reply

Thread Tools


All times are GMT -5. The time now is 06:46 PM.
Copyright 2006-2017 Crohnsforum.com