vaginal fistula surgery???

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Eva Lou
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Date Joined Sep 2006
Total Posts : 3432
   Posted 11/27/2007 2:21 PM (GMT -7)   
hi everyone! I usually post on the UC forum, but with this topic, figured this forum is where the info is at. SO- a little history on me- diagnosed with UC in 2003, have been on nearly every med in that arsenal. Had proctocolectomy scheduled for mid-November- suddenly, Remicade started working again (at a higher dose), & BAM! I'm in remission, for the first time in about 2 years. Life is good, indeed! 2 weeks ago, I start getting this discharge- I think it's my period. But...it's a little funky. Then, I get the gas thru my vagina. Now I know things aren't right. I talked with my GI today- we are doing a CAT scan soon, & I have a gyn. appt......in 2 weeks!!!! I'm 99% sure it's a fistula. I do some looking on the net, only to find very little info on these. I was so thrilled to have escaped major surgery, now it looks like I may be having suirgery after all. My questions are these- is the repair surgery considered major? Minor? I think it's a fairly small one, as I have very little discharge- only when I strain to have a bowel movement, really. Plus I have little to no pain- some discomfort, but not pain. For those of you who have had these fixed, do they tend to re-occur? Truth be told, it's not bothering me too much- it's 10 million times better than a bad flare! It does not affect my day to day living much, aside from the intimacy issue. Is surgery considered the first line of defense in curing these? I've heard they also use Flagyl- does it work? And is there anything I can do in the meantime to prevent it from getting worse? Any info would be great- like I said, there is surprisingly little on this condition on the internet. Thanks!
diagnosed with UC '02
meds-
Asacol- 8 tabs/day
Remicade infusions
Imuran- 100mgs/day
Prednisone- 15mgs/day
 


justjenjen
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Date Joined Nov 2003
Total Posts : 518
   Posted 11/27/2007 2:54 PM (GMT -7)   
Medication can help with fistulas but not always. I had one in that area that refused to close up--it healed but scarred up--like a piecing! So, for me they took some skin and "patched" it up rectal side so the stool and gas would not go through it. It was minor surgery--1 night stay. It's possible to get a permanent fix but I only had that done when my colon was removed. I couldn't tell you the difference in recovery time between a patch and a perm. fix. I hope it heals with the meds!!

Eva Lou
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Date Joined Sep 2006
Total Posts : 3432
   Posted 11/27/2007 3:54 PM (GMT -7)   
boy, am I relieved to read your reply! I know everyone's different, but I can deal with minor surgery.... once you start reading studies on the internet, they talk about temp colostomies & all, to speed up healing... I'd rather not get my colon removed unless I absolutely have too. I suppose after the CAT scan I'll have to talk with my GI at length about treatment options/plans, etc. What apain... if it's not one thing it's another! Sometimes I swear I would like to have my entire mid-section/genital area replaced with steel or something. eyes
diagnosed with UC '02
meds-
Asacol- 8 tabs/day
Remicade infusions
Imuran- 100mgs/day
Prednisone- 15mgs/day
 


Writer
Regular Member


Date Joined Aug 2006
Total Posts : 443
   Posted 11/27/2007 4:12 PM (GMT -7)   

Surgery can be iffy for rectovaginal fistulas. Sometimes it works, but other times the fistula just opens up again and you end up with a series of surgeries. So if it's not bothering you too much, you might want to try medication first. Flagyl is usually the first choice, and can work really well. If that doesn't succeed, 6-MP is another option. It seems to close up fistulas in around 30 to 40% of the people who try it. Remicade, too, can be effective, but since you developed the fistula on Remicade, it doesn't seem like that's going to be the ideal treatment option for you. Finally, when fistulas are very small and not too troublesome, some people just decide to live with them.

Anyway, I hope you get some good advice from your doctors at your appointment.


Eva Lou
Veteran Member


Date Joined Sep 2006
Total Posts : 3432
   Posted 11/27/2007 4:47 PM (GMT -7)   
I was surprised my GI doc didn't put me right on Flagyl- he's usually right on top of things like that. I can live with the fistula itself, but the intimacy issue could be a problem. I'm also hoping to see some improvement with my next Remicade infusion, which is this coming Monday, December 3rd. The fistula (well, drainage/discharge) started 5 weeks after my last infusion. And I've been on Imuran for a looooong time, which is basically the same as 6MP. You'd think they would have some sort of filler, like silicone, that they could stuff into a fistula.

diagnosed with UC '02
meds-
Asacol- 8 tabs/day
Remicade infusions
Imuran- 100mgs/day
Prednisone- 15mgs/day
 


FitzyK23
Veteran Member


Date Joined May 2005
Total Posts : 4219
   Posted 11/27/2007 6:02 PM (GMT -7)   
Let me know what you find out. Also, Im assuming your discharge has a color to it since you confused it w/ your period. I get a white (normal looking) vaginal discharge every time I have a bowel movement. I think it is very odd.... and I get pressure sometimes "down there." Told the GI, had a gyno pelvic exam, told no fistula. Im just going to wait a little while and then have them look again. Its been almost 6 months. Let me know if you end up having one and how they find it, and a little more details about your symptoms. Thanks!! PS: I can still be intimate no problem... just a little pain on insertion that goes away after its "all the way" in.
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!!!
 
 


Eva Lou
Veteran Member


Date Joined Sep 2006
Total Posts : 3432
   Posted 11/28/2007 2:34 PM (GMT -7)   
I certainly will! I have a pelvic CAT scan with IV & liquid contrast scheduled for this Friday, & my doctor can give me the results the following Tuesday... he takes every Monday off, you know those doctor's hours!!! The discharge has stopped the past couple of days- it was a brownish-yellow color, & it seemed to appear mainly when I strained during a bowel movement. It started as a "gush" (all on it's own), & when I went into the bathroom to check it out, it seemed to be the beginning of a period. Then over the next few days, it slowed, but I still had to wear a panty liner. Not a pad- just a liner, so it was very light. And when I had a BM, it would increase & have what looked like flecks of stool in it. There was no odor, really. And for about 2 weeks, I had a regular, very light discharge. I also had some gas escaping thru my vagina, so that's what really makes me think it could be a small fistula. I'm hoping it's not, but..... But over the past few days, I've had no symptoms- no gas, no discharge, nothing. I don't know what's going on at this point! As long as I'm not flaring, I'm not minding it to much. I'm glad to be having the scan done so soon though, because if it is a fistula, I'd like it taken care of ASAP! I'll post more when I find out the results.
diagnosed with UC '02
meds-
Asacol- 8 tabs/day
Remicade infusions
Imuran- 100mgs/day
Prednisone- 15mgs/day
 


chroniemomx2
Veteran Member


Date Joined Apr 2005
Total Posts : 2346
   Posted 11/28/2007 2:56 PM (GMT -7)   
Mine healed with a high dose of flagyl and remicade.  I would keep up the remicade and start flagyl before I had surgery for that. Are you sure you don't have crohns? Alot of us were first diagnosised as UC and then it was changed to crohns...

Eva Lou
Veteran Member


Date Joined Sep 2006
Total Posts : 3432
   Posted 11/28/2007 3:48 PM (GMT -7)   
see my other post, UC vs Crohn's... I'm beginning to wonder about my diagnosis.

diagnosed with UC '02
meds-
Asacol- 8 tabs/day
Remicade infusions
Imuran- 100mgs/day
Prednisone- 15mgs/day
 


Mormor Vicky
Veteran Member


Date Joined Mar 2007
Total Posts : 684
   Posted 11/28/2007 6:39 PM (GMT -7)   
I'm thinking that the only time they absolutely have to do surgery is when you have a fistula to the bladder. The bladder needs to be repaired. Meds are the first line of defense.

Lucky me. My fistula went straight to the bladder. That's how I discovered I had Crohn's. Someone set me straight if you know more.
Vicky / 47 years old
DX'd with Crohn's during a resection August 2006
DX'd with Steriod induced Diabetes November 2006
Considered in Clinical remission but have minor signs of disease activity
 
Daughter (26) also has Crohn's since she was 12.
 
Currently on 4000mg of Pentasa only for Crohn's
No longer able to take 6-MP because of Bone-Marrow Suppression
Cymbalta, Metformin, Lipitor


Betagirl
Veteran Member


Date Joined Jan 2003
Total Posts : 1928
   Posted 12/1/2007 9:46 AM (GMT -7)   
Hi
I've had a RVF for about 2 years. I did consult with a surgeon who repaired another fistula to my skin about it. She said the surgery was completely elective and that she didn't recommend it unless I was really having problems. I decided to try to treat it medically. It's still there, but as long as the crohn's is under control it doesn't bother me. I'm under the impression the surgery isn't very successful a lot of the time because of where it's at.

Good luck. They're lovely aren't they?
"Only the meek get pinched...the bold survive." 


Eva Lou
Veteran Member


Date Joined Sep 2006
Total Posts : 3432
   Posted 12/4/2007 3:09 PM (GMT -7)   
hi everyone! Well I had the CAT scan done this past Friday- just talked with my GI tonight. It showed no signs of abscess, no fistulas, nothing! And my labs came back totally normal- which for me is huge, as I haven't had "normal" blood work in a long time. I'm still in remission, & had a Remicade infusion yesterday. However, I still do have that lovely discharge that made me think it was a fistula in the first place! I have a gyn. appt. next Friday, & hopefully they'll be able to find out what's going on. I still am suspicious that it could be a tiny fistula- I know they can be hard to diagnosis, & I'm thinking that a CAT scan is not the best way to get a diagnosios anyway. Hhhm.

diagnosed with UC '02
meds-
Asacol- 8 tabs/day
Remicade infusions
Imuran- 100mgs/day
Prednisone- 15mgs/day
 


FitzyK23
Veteran Member


Date Joined May 2005
Total Posts : 4219
   Posted 12/4/2007 6:37 PM (GMT -7)   
I tried to reply before but got the spam filter. Here we go again. I am in the same boat as you. I have a discharge from my vagina when I have bowel movements. My GI sent me to my primary for a pelvic exam and no fistula was found. Heard nothing further. Recently I have had some pain during sex, more discharge with bowel movements, as of yesterday discharge that looked like spotting after my period (even though it is not time for my period) with bowel movements, and pain and pressure in my vagina when I have a BM. Also I have a slight stabbing uncomfortableness in my vagina throughout the day. It is mild but feels like I am being pricked with something on the left wall. I called a highly regarded gyno today and asked her nurse whether she has experience dealing with crohns patients and fistulas. She will get back to me tomorrow. If she does have experience in this I am going to make an appointment and have her start fistula hunting. Ive heard of a dye test where they put something like a tampon in the vagina and dye up the butt and see if it gets into the vagina. I'm not sure if this is even all that reliable though if stuff isnt actively passing through the fistula. Plus mine, if I have one, feels like it is in the vaginal canal, not up where a tampon would go. *sigh* I do have days though where I poop and when I wipe find some poop surprisingly near the front instead of the back. But, I know that crap can travel no pun intended so who knows if it is a fistula or not. Hopefully I will know soon. What worries me is I am doing well with just pentasa but if I do have a fistula my doc is going to want to jump up to remicaide or 6mp. Ive been doing so well with such a mild drug I hope that doesn't have to happen.
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!!!
 
 


inflamed
Veteran Member


Date Joined Nov 2005
Total Posts : 1340
   Posted 12/4/2007 8:52 PM (GMT -7)   
Hi Fitzy. I've had that stabbing pain on the left wall on and off for a while. I've never had the other symptoms to make me think fistula. Let us know what you find out about it.
Currently in remission!


Eva Lou
Veteran Member


Date Joined Sep 2006
Total Posts : 3432
   Posted 12/5/2007 2:04 PM (GMT -7)   
same thing for me, Fitzy! The symptoms you edsrvibe are nearly indetical to mine.. yet my GI seems unconcerned, I guess because the CAT scan showed no abscess or anything. I think I did have an abscess about 2 months ago, & my symptoms started after that went away. My gyn. appt. is next week, & I plan to really question her re. her experience with fistulas/IBD. It seems a if NO doctor has much experience with these, & they tend to pass you off to either a urologist, a GI, a gyn, etc. No one wants to deal with them! I've heard of that dye/tampon test too, & it seems to be the most reliable indicator. So why aren't we having them done??!!? Gggrrrrrr... so frustrating! The fact that my discharge occurs when/right after I have a BM, & the fact that it also looks suspiciously like stool... come on, what else can it be?!?! I'm on remicade, which they use to treat fistulas, so hopefully my most recent infusion will "cure" this. If that's what it is. Let's keep each other informed!

diagnosed with UC '02
meds-
Asacol- 8 tabs/day
Remicade infusions
Imuran- 100mgs/day
Prednisone- 15mgs/day
 


FitzyK23
Veteran Member


Date Joined May 2005
Total Posts : 4219
   Posted 12/5/2007 5:37 PM (GMT -7)   
*sigh* so the potential gynocologist's called me back today and said that she was not comfortable with her experience level with fistulas. I do appreciate her honesty but I wonder if I scared her off with my questions. She gave me a recommendation over the phone and I was very excited that I would have someone else to call tomorrow. But, I googled the recommended doctor today and she is a colon and rectal surgeon. Not sure how I feel about that. I really wanted to see a gyno. I don't know if I feel comfortable seeing a surgeon w/o talking to my GI first. Why does this have to be so complicated???? And you are so right Eva - NO ONE wants to deal with this. GI says see a gyno, gyno says see a GI... only my primary will look into but all she did was literally look into my vagina lol. Oy Vey. SO! Should I call the surgeon tomorrow or should I call my GI or my primary? This sucks. My primary just gave me a referral to an allergist for other reasons. I don't want to keep calling for referrals. Especially since my primary thinks I don't have one. Also, I wouldn't mind seeing the surgeon but if I do have one I would like to explore all my options, not just surgery.
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!!!
 
 


Eva Lou
Veteran Member


Date Joined Sep 2006
Total Posts : 3432
   Posted 12/5/2007 5:52 PM (GMT -7)   
just my opinion, but I'd call your GI to check in, then call the surgeon. From what I've heard/read, womem who do have these either get diagnosed by their GI or gyn, then get shipped off to a colon/rectal surgeon to talk about surgically "fixing" it, if that's the route they choose to go. You can always have the srugeon take a look, see what's going on, then discuss treatment options other than surgery with him and/or your GI. I'd imagine the surgeon would be the one with the most experience anyway. You'd hope! And if your primary gives you any grief, play hardball with her- I mean, you are having symptoms & she can't seem to figure out why! I'm sure she's qualified & all, but just to get the referral! I'm very lucky in that my primary care doc has this referral office- all you do is call, & they give you the info right then & there, no questions asked, etc. I also think my primary care doc only wants to deal with the most basic/rudimentary care- he's a good guy & all, knowledgeable, caring, good "bedside manners", etc. But when anything gets funky--- referral time! Oh my gosh, good luck!!!! I'm totally curious to find out what happens- I myself can't stand waiting another week, only to have my gyn. say the same thing yours did!
diagnosed with UC '02
meds-
Asacol- 8 tabs/day
Remicade infusions
Imuran- 100mgs/day
Prednisone- 15mgs/day
 


Crohnsy
Regular Member


Date Joined Mar 2006
Total Posts : 22
   Posted 12/31/2007 5:18 PM (GMT -7)   

After a topic search, I was so relieved to find this thread!  I've been experiencing identical - I mean exactly the same - symptoms as you, Eva Lou!

Mine started as an incredibly bad UTI that just wouldn't go away - after I started having this sort of brownish-pink discharge (lovely!) and sort of a mucus-y discharge, I finally I went to a urologist who put me on cipro and that seemed to work for the pain.

That was about two weeks ago. Since then, I've had some "gushing" as you mentioned - so I've taken to wearing the pantyliners.  And it comes and goes - some days, nothing.  I realize now that it's really only gotten bad when it's associated with a bowel movement, especially when there's straining.  Constipation's never been a problem, but lately that's accompanying it.  Once I finally go - it's liquidy and then the discharge starts.  Uh, it's so gross.  Luckily, there's no odor associated, so I'm wondering if it's a bladder fistular as opposed to rectal. 

I've even noticed it will "leak" when I cough or haven't gone in a while (like just before I wake up).  It's not painful, as you said, but enough with the sheet protectors and pantyliners!

I stopped Remicade treatments almost a year ago as I began fertility treatments - I still take Pentasa, for whatever good that does.  Remicade worked amazingly well - I started it just three months after my Crohn's diagnosis, so I never had time to experience fistulas and other 'extracurriculars' of CD.

I'm really freaked out at the prospect of surgery or heavy duty meds since I'm due to start my first in vitro cycle in January.  It's so expensive, I don't want anything to jeopardize it - but at 37, I don't have time to take months off from the process...

 

 

 

 

 


Dx w/Crohn's November 2005 - still active as of November 2007 Hospitalized once, no surgeries
Colonoscopy, 2 ultrasounds, MRI, upper GI x-ray, abdominal x-ray, 2 camera endoscopies
First, Flagyl/Cipro, Prednisone, and Pentasa
10 Remicade treatments
Currently just Pentasa (4000 mg) b/c trying to get pregnant
Symptom-free (mostly) since March 2006
 


FitzyK23
Veteran Member


Date Joined May 2005
Total Posts : 4219
   Posted 12/31/2007 5:34 PM (GMT -7)   
Eva- just an update on my situation. I saw my GI today. He thinks it sounds like a fistula but doesn't want to up the arsenal until he is positive since I am one of the rare few who respond well to Pentasa. He is referring me to the colo-rectal surgeon that the gyno who didn't want to see me referred me to. He doesn't really think surgery will be necessary if I have one and we will discuss the options between a flagyl/cipro combo, 6MP, Rem or Humira, if they find one. He was shocked the gyno wouldn't see me but said that the colo-rectal has a better chance at finding it. He considered ordering a CT again but wants to see what she finds first.
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!!!
 
 


broomhilda
Veteran Member


Date Joined May 2007
Total Posts : 1488
   Posted 1/1/2008 9:35 PM (GMT -7)   
Never had a fistula but can relate to the stabbing shooting bladder like pain that radiates up my torso. I haven't had that so much since the resection...maybe I was on the verge of a fistula at that time. I have had what I thought to be breakthrough vaginal bleeding as you all have descirbed. Just enough to wear a panty liner. The only way I could be sure it was vaginal was to use a tampon. I related mine to perimenopause since the prednisone is known to screw with your hormones and my cycles have been way off for the last six months. I'm starting natural progesterone therapy this month. I don't know if this really helps anyone and I can't say that I've noticed an increase in the vaginal discharge during BMs, however, I'll be on the lookout. I've found no odor as well to make me believe it's bowel related. Good thread, very informative.
Dx'd Jan'06, 1st Resection 7/06, Predinsone, Humira, Imuran, B12 injections, Nexium. Secondary conditions: Psorasis, Acne, Fatigue, Joint Pain, Lactose Intolerant, gallstones, fibroid cysts, peri-menopausal.


princesscolon
Veteran Member


Date Joined Apr 2006
Total Posts : 733
   Posted 1/1/2008 11:11 PM (GMT -7)   
I am wondering what happened to Eva. I have a ulcer tunneling towards my vagina, I am on Remicade and it is 1/4 an inch deep, it was about 1 inch but the Remicade seemed to close it. My GI says I am still at risk of it preforating and that the surgery to repair a rectovaginal fistula is complicated. I haven't found much information online or anywhere. I hope everyone is doing better now!
Diagnosed with Left-sided Ulcerative Colitis 1995 at 15
Tried: Prednisone, Rowasa & Hydrocortisone Enemas, Proctofoam, Sulfasalazine, Asacol, Probiotics, Fish Oil, Canasa, Enotcourt, Colazol, Proctocort, Anamantle, etc...
Diagnosed with Ulcerative Proctitis with almost rectovaginal fistula in 2004, put on Remicade,ulcer shrunk in 3 months, August 2007:Increased Remicade dosage-700mg every 6 weeks,diagnosed with Psoriatic Arthritis & Fibromyalgia Current meds: Remicade 700mgs every 6 wks ( had reaction, will start Humira in 6 weeks) Lomotil, Darvocet, Clorazepate, Proctofoam HC, Tapering Prednisone again :( for joint pain


FitzyK23
Veteran Member


Date Joined May 2005
Total Posts : 4219
   Posted 1/2/2008 7:33 PM (GMT -7)   
I think Eva posts on UC. You may want to look for her there.
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!!!
 
 

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