Fistula plug -- Has it worked for you?

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FallColors
Veteran Member


Date Joined May 2007
Total Posts : 1220
   Posted 12/31/2007 6:55 PM (GMT -7)   
Hello all.  I am considering trying the plug for my peri-rectal fistula and am wondering if any of you have tried it.  I would be very interested in learning about your experiences!
 
My colo-rectal surgeon told me I have 3 options:
1) Do nothing.  He said there is no harm in leaving the seton in (it doesn't bother me). I could always try the other options at any time.
2) Try the plug.  My surgeon said the plug has a 40 - 50 % success rate in CD people but can be tried several times.  He said the procedure is minimally invasive (no incisions -- just a stitch or two to keep it in place).  He said I would need to be in flat bed for 3 weeks -- no sitting or walking (except for going to the bathroom) -- in order to give my body the best chance to grow into the plug.
3) Advancement flap surgery.   He said has a 70 - 80 % success rate in CD people.  He says my fistula is too high for any other surgical option.  Just as with the plug, he said 3 weeks flat in bed.
 
He recommended the plug before going for the advancement flap because the plug involves no cutting.  He said if it was him, he would try the plug several times before considering the advancement flap.
 
What has been your experience?  Does the information my surgeon gave me match what you have been told?
 
Thanks in advance for your response!

upt0106
Regular Member


Date Joined Dec 2007
Total Posts : 47
   Posted 12/31/2007 7:31 PM (GMT -7)   
howdy,
while I have not considered the plug, I did have a seton in for a number of months to treat a peri-rectal abcess/fistula
My surgeon also said there was no harm in leaving it in, and that actually, after a while, it would sort of be like a piercing, where the hole won't go closed anymore. With this understanding, I had the seton taken out. That was in four and half years ago. I still have the hole, and fistula tract where the seton was, and it still drains a little bit from time to time during a flare up, but it doesn't really bother me. In fact, I think it's what keeps me from getting another abscess. The way I understand it, since there is always a path for puss and other bad stuff to get out, if the inflammation acts up, it can easily drain without building up into an abscess. My current GI would like me to take remicade, with the hopes that it would permanently heal the fistula, but I'm pretty content with having that extra drain in my bottom as a safety net...I've not been on any meds for my Crohn's since I had the seton taken out, and hope to stay that way as long as I can.
So, what is all my babbling leading to? If I were you, (although of course I don't know your specifics), I would leave the seton in until it bothers you, then have it taken out and do nothing.
my 2 cents :)
-ak

FallColors
Veteran Member


Date Joined May 2007
Total Posts : 1220
   Posted 1/1/2008 6:33 AM (GMT -7)   
Thanks, Upt0106. I am glad your fistula is behaving well for you! I had such a horrible abcess that the entire area became inflamed with cellulitus. It nearly killed me, so I think I would keep the seton just to make sure it doesn't clog. But it is great to hear that someone else is having success! Thanks again for responding.

praying4healing
Veteran Member


Date Joined Dec 2007
Total Posts : 739
   Posted 1/1/2008 11:55 AM (GMT -7)   
hi u guys

i have like 5 setons, most recent being added to my girly parts in december. I was never told about there being a piercing look or anything, they put the first ones in during an emergency and this last one too. All i know is my strings are blue :o/ I actually dont even know where the last one is b/c it all looks the same down there to me ( when i have the courage to look anyway). My prior gastrointeroligists had suggested that i ask my surgeon about the plug, which is what i really really really wanted instead of the ileostomy. But the surgeon said it was a no go b/c i still have constant infective activity and the plug would just come out. He said after i have the ileostomy then i could consider the plug and he would address my stricture, which was what i initially went to him for last year.

I often wonder if this is y im having such activity with my rv fistula. I am of the understanding that the stricture makes it harder for stool to pass out the right way, in which case im thinkin mayb thats why it comes out so easily from my secret no no spot. So y couldnt my doc just fix my stricture first?! I dont know, i didnt even know half of the questions to ask until I found this site.
25 y/o female- crohns disease since 14
Ileostomy pending-very worried
Tried asacol,pentasa,prednisone,remicade,6mp,azasan, no avail
Seatons placed
Worst year ever!

"For God has not given us the spirit of fear....."
Where does mine come from?!


FallColors
Veteran Member


Date Joined May 2007
Total Posts : 1220
   Posted 1/1/2008 4:32 PM (GMT -7)   
WOW! Five setons at once! I am glad I can't compete with that! My lonely one is a fashionable red. And I would very much like to keep it very, very lonely! If you get anymore information about the plug, I'd appreciate it if you would share it with me/us!

grouchygut1
New Member


Date Joined Nov 2006
Total Posts : 4
   Posted 1/2/2008 6:43 AM (GMT -7)   
Wow, it has been a very long time since I have been able to be on here. I was in school full time for 1 1/2 yrs. Anyway, I saw your questions about the plug and thought I would give you my take on it. I have had a recto/vag fistula every since I found out I have Crohns, 5 years ago. I have had multiple surgeries on the thing. They can't do much because it is in my external sphincter muscles in my rectum. If they would do something to those, I would be incontinent. So, I have had the fibrin glue done by a general surgeon and was told later by a colorectal surgeon that he could have told me that NEVER works for these types of fistulas. I have had the "plug" done twice, the first time it come out within three days, the second time it stayed for a few months, until I had a flare. If your fistula is not a big one, it might work for you. My options at this point are to let it drain or have a proctocolectomy. I think like some of the others, I think it provides an "out" for some of that infection and keeps me from getting an abscess. Other than having to wear pantyliners all the time and the intimacy issue, I would rather deal with it at this point in my life than have a proctocolectomy. Hope this helps and good luck!

FallColors
Veteran Member


Date Joined May 2007
Total Posts : 1220
   Posted 1/2/2008 5:56 PM (GMT -7)   
Hi Grouchygut1. Thanks for your insights! I am sorry to hear that you got bad advice from a general surgeon. I too went to a general surgeon at first -- he had no clue what he was doing or what the problem was. I was too sick and too green to even ask questions. After nearly dying, I got in with Drs who have many years of experience with CD.

My colo-rectal surgoen says my fistula is narrow. And it is a peri-rectal not a recto-vaginal like yours.
Clarification -- did your colo-rectal surgeon say that the plug never works for recto-vaginal fistulas or for fistulas in general?

Thanks again!

fistulagal
New Member


Date Joined Jan 2008
Total Posts : 6
   Posted 1/7/2008 5:50 PM (GMT -7)   
Hi all I am currently going through this myself and thought I would share my stories on the topic. I have had these re-occuring fistulas for 2 years now. I had the Seton placement and then had the plug put in and it came out within a few months. I had the setons put in again and left them there to drain. We did the plug again 6/07 in 2 of them and one of them did close the other is open. Just had the seton put in that one a couple of weeks ago again but I am still in pain. Just left the Surgeons and he thinks it's more of a bathroom issue with me - apparently 6-10 times a day does do well with the bottom, so off to the Gi tomorrow and I think they will put me on remicade again - I did do this once before when I had a rectal vaginal fistula and it closed it. I am just nervous about going back on the medication again I am on 6mp currently. My surgeon did say to me though that the plug will not work for a vaginal fistula. Interesting to read that they said you had to be in bed for 3 weeks. I only had to be on liquids for a few days I had pain and some pressure the first few days with it. Presonally I do not like my little blue friends as I call them, maybe if I had the D under control we would live harmony a little better. All in all I have had some success with it maybe in time I will get the other one closed.
Fistula Gal
Sick and tired of being sick and tired
 


Glad Bag
Veteran Member


Date Joined Mar 2007
Total Posts : 699
   Posted 1/7/2008 6:18 PM (GMT -7)   
it seems you are all women, I commend you all for dealing with this dreaded aspect of Crohn's.

I myself am a guy, so it's a bit different for me, since I can't get a recto-vaginal fistula. Since my body couldn't give me one of those, it decided to attach a fistula or two to my scrotum, leaving me very unconfortable at times, like today, which is why I am on the board right now. Posting and reading here is one of the few things I can do when the frustration is so bad and the isolation of this disease kicks in from these kinds of syptoms that just won't seem to ever go away for good.

I had surgery and got an ileostomy back in April of 07 (i can say back in 07 now!) with the idea that it would give my lower end time to heal and the fistulas a chance to get a break from the constant irritation that comes with regular digestion. IT worked amazingly at first, but now the fistulas seem to drain just as much as before and are just as uncomfortable some days and I really don't know how I cope sometimes. I guess I have been living with it all for almost 15 years now, so I don't really know there is any other way.


I have heard about the plug, in fact my surgeon is one of the pioneers of that treatment out of Cedars-sinai, but the idea seems like a waste of time to me. Just how i feel at the moment.


I am almost convinced that the next appt I have with the colo-rectal surgeon, I am gonna ask for the full recto-colectomy and have em' close me up for good on that end. will that bring relief? i pray at night and in the bathroom during the day. I am sure you have all given similar prayers form the porcelain throne.

anyway, I wanted to say I understand your pain ladies and i guess I ended up whining more than I meant to.

Talk to you all soon.

p.s.: i think mine are orange. i don't look that often anymore either....it's too scary
mad mad mad mad mad confused confused eyes eyes sad
"The things that make us feel so abnormal, are actually the things that make us all the same" - from PostSecret: Extraordinary Confessions from Ordinary Lives - by Frank Warren


chroniemomx2
Veteran Member


Date Joined Apr 2005
Total Posts : 2346
   Posted 1/7/2008 6:59 PM (GMT -7)   
Gladbag....so unlike you to be so down. I feel for you. I hope you start feeling better soon. Good to hear from you again though.

I have had my seton since Sept. of 06. It is red. :) I went to my srugeon the beginning of Dec., and he was very happy with the progress it has made. It has been migrating south. :) Meaning that he doesn't think there is any muscle involvent anymore or very little. So, I go back in Feb. to see him again, and he wants to schedule an exam under anesthesia to see if he is right. If he is right, then he will do a fistulotomy. Slice it open, clean it out, and leave it open to heal. I am not pushing for any surgery....because my seton doesn't bother me. Would I like to not have a fistula? Of course, so we'll see what happens.

FallColors
Veteran Member


Date Joined May 2007
Total Posts : 1220
   Posted 1/7/2008 7:41 PM (GMT -7)   
Thanks everyone for your responses! I think my colo-rectal surgeon may have said it right -- the plug is worth a shot but don't be dissapointed if it doesn't take.

Unfortunately, my fistula is too high for a fistulotomy so it is the larger surgery (advancement flap), the plug, or live with my "close companion". Considering how bad an infection I had, I don't want to risk living with an open fistula. I just don't trust it to behave well and not clog.

At first I had a temporary seton put in first and it was a very attractive blue. The one I have now is fire-engine red. Maybe we should start a fashion line of setons -- stripped, spotted, festive designer colors..... One for every occassion!! But who would model them??

Glad Bag -- keep praying at all times! Tell him everything and ask for strength, peace, and guidance.
"4 Rejoice in the Lord always. I will say it again: Rejoice! 5 Let your gentleness be evident to all. The Lord is near. 6 Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God. 7 And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus." (Philippians 4)

"10 So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand." (Isaiah 41)

upt0106
Regular Member


Date Joined Dec 2007
Total Posts : 47
   Posted 1/7/2008 9:41 PM (GMT -7)   
ah yes, I remember my ceton well...it was a nice blue color... eyes
--
Male, Age 31
Diagnosed with CD in 2002

FitzyK23
Veteran Member


Date Joined May 2005
Total Posts : 4219
   Posted 1/8/2008 9:00 AM (GMT -7)   
Ladies!! How were all your RV fistulas diagnosed? I am a human ping pong ball at the moment. The GI hasn't done a pelvic since med school and wanted to send me to a gyno... as soon as I mentioned crohn and possible fistula she did not feel competent to look for one. Both referred me to a colo-rectal surgeon who said that I need too see a gyno for dianosis. I am calling the CCFA to see if they know a crohns competent gyno or a gyno competent GI. What do you all have?
26 Year old married female.  Diagnosed w/ CD 3 years ago, IBS for over 10 years before that, which was probably the CD.  Currently on Pentasa 4 pills/4x day, hysociamine prn, nexium, and ortho evra.  Good times!!!
 
 


praying4healing
Veteran Member


Date Joined Dec 2007
Total Posts : 739
   Posted 1/8/2008 9:37 AM (GMT -7)   
well fitzyk23 for me and the most iv read about you usually dont need anyone to diagnose it. I happened to b asleep one night, thought i was gonna pass gas and it came outta the front instead of the back! i just thought it was weird at first, then it happened more often, i finally just mentioned it to my gastro and he was like oh my, looks like you've developed a rv fistula. From what i've read, mosty GYN's are not familiar with rv fistulas and if u have one or think u do, its best diagnosed by ur GI or a colo rectal surgeon, who they'll probably refer u to anyway
25 y/o female- crohns disease since 14
Ileostomy pending-very worried
Tried asacol,pentasa,prednisone,remicade,6mp,azasan, no avail
Seatons placed
Worst year ever!

"For God has not given us the spirit of fear....."
Where does mine come from?!


Glad Bag
Veteran Member


Date Joined Mar 2007
Total Posts : 699
   Posted 1/8/2008 10:59 AM (GMT -7)   
ok, i was in a pretty worn-down mood last night when I posted here. I think i am better today, at least I am telling myself that.

thanks for the prayers Fallcolors, that was a nice gesture and suited me well this morning!
"The things that make us feel so abnormal, are actually the things that make us all the same" - from PostSecret: Extraordinary Confessions from Ordinary Lives - by Frank Warren


FallColors
Veteran Member


Date Joined May 2007
Total Posts : 1220
   Posted 1/8/2008 6:13 PM (GMT -7)   
Glad Bag -- I'm happy to hear you are feeling better today! You did sound down. I've got a lot more scripture verses if you ever want them. Email me directly!

FitzyK23/pingpongball -- I hope you find Drs who will take ownership of this! You'd think they all would want to take a look and learn something. I am hoping you can find a GI and colo-rectal surgeon who are experts with CD because you will propably need both to fully diagnose what you have.

Take care everyone.

fistulagal
New Member


Date Joined Jan 2008
Total Posts : 6
   Posted 1/10/2008 7:13 AM (GMT -7)   
Fitzyk23 - when I got my rv fistula I had no idea what was going on I thought it was a girly thing and made an appointment with my Gyno and she was the one that told me it was a issue with my crohn's and quite honestly my GI really didn't diagnose it either he kept telling me to go back to the gyno, finally he sent me to a surgeon because it was an abcess at that point and had to be lanced - good times!!! He was the one who told me it was a fistula. It would never stay open and draining so I was visiting the surgeon quite often - the only thing that ended up fixing it was the remicade . I am surprised that the colo-rectal surgeon told you to see your gyno they really don't have anything to do with it at least mine didn't. Is it draining or is it an abcess? Almost easier to be an abcess so the surgeon has to see you. Good luck with it - so frustrating when people don't listen
Fistula Gal
Sick and tired of being sick and tired
 


FitzyK23
Veteran Member


Date Joined May 2005
Total Posts : 4219
   Posted 1/10/2008 7:34 AM (GMT -7)   
I don't believe I have an absess nor am I certain I have anything draining or even have a fistula. I just have a lot of symptoms and think that I may have one and want someone to look and find out for me.
26 Year old married female.  Diagnosed w/ CD 3 years ago, IBS for over 10 years before that, which was probably the CD.  Currently on Pentasa 4 pills/4x day, hysociamine prn, nexium, and ortho evra.  Good times!!!
 
 


descrapster
Regular Member


Date Joined Jun 2007
Total Posts : 155
   Posted 1/10/2008 8:22 AM (GMT -7)   
I feel like the oddball...my seton is Green! I recently went to my OBGYN because I was not happy with all the answers I was getting from my other doctors regarding this fistula. My Colo wants me to start remicade and put the plug in. She also told me that I should not risk getting pregnant while on Remicade. I did not like that answers so I went and sat down with my OB and told him what I felt. We both came to the decision that I should do nothing about the plug right now because I am not in any pain from it. I am going to hold off and try to get pregnant and then maybe see what I do about the fistula. My fistula was a nightmare for me when I was in a constant flare for about 6 months. Once I got my tummy under control (Thank God), I don't even remember I have one half the time. If it bothers me again for a while then I think i'll go and see what I can do but I am content right now not being on extra meds and restrictions. This is just my story and I know, unfortunately, that I am one of the few lucky ones. Hope you feel better soon!
Descrapster
Diagnosed with CD June 15, 2007
Currently 2 Fissures and 1 Fistula...YAY! Seton Drain currently in.
8 Pentasa/day
Had to stop Flagyl because of numbness in my toes!
 


ArtistMum
New Member


Date Joined Jan 2009
Total Posts : 12
   Posted 8/28/2009 5:31 PM (GMT -7)   
I thought I would post on this forum because its mostly woman and I need woman support. I am post plug surgery and into it by a month. The surgery scar has healed but keeps discharging, so I am having two days os healing and then back to scratch again. I'm guessing the operation has not been a success and I too might get my blue fashion accessory back again. This is depressing. I am not sure how to navigate this web site and would like constant support. If I knew where to log on and get constant support it would be helpful. Today I don't want to get out of bed. Its been exactly a year since it all started and so I think I am having anniversary blues.

frogeleita
Regular Member


Date Joined Jul 2009
Total Posts : 342
   Posted 8/28/2009 5:41 PM (GMT -7)   
oh man..mine is red..i don't think i could lie flat anywhere for three weeks..not with 2 kids..

 crohns/colitis/lupus/hyperthyroidism-seton fistula pentasa prednisone cipro flagyl vicodin Ultra

waiting on Remicade


livingwhole
New Member


Date Joined Mar 2011
Total Posts : 4
   Posted 3/29/2011 5:26 PM (GMT -7)   
I realize this was posted a while back but I want to give my experience. I had the fistula plug surgery about 5 weeks ago. I was really scared after reading so many forums but we prayed and I went ahead with it. I was feeling pretty good the first couple of days but my pain got worse withing the 4-6 days. I didn't have a strong enough stool softener so I highly recommend Benefiber to make sure you have smooth bm's. Also, just know you will be sore after a few days even if you weren't as sore at first. My plug had a button sewn to keep it in place but because of where it was, it was half inside and half outside. I think that was part of what made it so painful. I had some white stringy looking things around the area but found out it was flesh-colored stitches that are supposed to come out. Then I had some drainage up until a few days ago. The last little bit was just a tiny bit of blood then nothing. My button naturally dissolved over time but sometimes I freaked out thinking it was the plug coming out. I was paranoid so my husband had to remind me that if it was the plug, there wasn't anything I could do. So, over time it healed and we just kept praying for closure (in every way!). I thank God for the healing because my doctor told me the success rate was 60%. Granted, I do not have Crohn's but I truly believe God made that fistula close!!

There is hope - fistulas can be cured.

jobell
Regular Member


Date Joined Feb 2012
Total Posts : 29
   Posted 2/19/2012 10:12 AM (GMT -7)   
My issuses with a perianal abcess which had to be operated on 4 times now, has turned into 2 fistulas.  I have had the fistulas banded Nov 2011 and have had 2 follow up appt with the surgeon for him to retie the bands as they had come untied. My last appt was this past Thurs Feb 16th in which he had to retie the bands incside the incisions.  It is now Sunday and I awoke to go to the toilet and the bands had fallen out. The were still looped and tied so this means the went through the fistulas.  I had extreme pain from Thurs til Sun.   Is this normal for them to fall out???  According to my surgeon I was to see him again in 6 weeks to have them tightened.  

Julia Hill
Veteran Member


Date Joined Mar 2008
Total Posts : 543
   Posted 2/19/2012 6:17 PM (GMT -7)   
FallColors,
 
It is so nice to see you back again.  I have never had a plug or a seton, just the fistulas and abscesses so I can't help there.  I just wanted to say that I'm glad you are back and I look forward to reading your posts.
 
Julia
 
 

bagpuss
New Member


Date Joined May 2012
Total Posts : 1
   Posted 5/14/2012 11:16 AM (GMT -7)   
 
Hi, I'm new here. smilewinkgrin
 
Got my unwanted episiotomy and whilst being stitched up received a 'prick' that appears to have given me the straight,hairline RVF that I've lived with since birth of son in 2008. The suspected perpetrator skull stated I got the RVF through 'pushing in labour' I did have a long labour but the RVF channel is straight and not a wavy line like most RVF's I've seen xrays of. Her husband kindly pushed my son out by shocked pressing hard upon my stomach/top of belly to 'encourage' baby out whilst she cut me and got ready to catch during one of the two contractions that I was in her birthing centre for.And I didn't appreciate the stirrups and lying on the back either. That was in Greece cool  . Since then I've waited for it to heal itself and got pregnant again, just recently giving birth to twins in the UK (great experience). turn Anyhow -
 
eyes  Three UK consultants checked the RVF and stated they suspect it occurred during stitch up. mad
 
I read on the web about BioDesign Plugs for RVF and the like, made by COOKMedical. After a few years I hope by now they have had good results from operations done a couple of years ago and that I won't be their first guinea pig. Apparently over 70 Health Authorities have agreed to trial the plugs for a particular remedial surgery, sadly not RVF's. 'FIAT' trial. smhair
 
My current consultant, who even goes to Guana three times a year to perfom remedial work on obstetric RVF's has only offered me invasive surgery. nono I have just spoke with him at a private appointment, although I am booked in with the NHS to see him on the 23rd May 2012. We are in agreement to scour the locality here to find a surgeon who will perform surgery with a plug. redface At least I have options.
 
I'll keep you posted, but it really is my wish to have this hairline nuisance plugged up for good asap. yeah
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