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L
For the poor souls who have dealt with RV fistulas, I wonder if you can describe what is considered 'mild/light/small fistula' and what is considered more 'serious/heavy/big fistula'.

As I obviously only have my own symptoms to go on, it's hard to know where I sit on the spectrum.

So if anyone would like to go into some TMI details, it would be much appreciated. ie. what the vaginal discharge is like, and frequency, quantity.

Pretty gross, but such is life!

Thanks.

Replies sorted oldest to newest

CJBCJBMember
Yes, us poor souls!
I have a small/mild/light fistula (in my opinion) because the discomfort associated with my fistula is minor enough that it is not worth sacrificing the functionality of my amazingly well behaved pouch with any type of repair.

I take one heaping teaspoon of metamucil each morning in a small glass of OJ to bulk me and that pretty much takes care of my symptoms. On days that I don't take the metamucil I notice much more discharge. I wear a panty liner every single day, and that is the extent of my inconvenience. I must keep clean, or I tend to get irritated.

Fun? No! Manageable? Yes!
For more in-depth TMI details, feel free to PM me.

Take care,
CJ
CJB
D dawn58Member
I had a fistula that you could not have a working jpouch. I constantly had drainage from my vagina and when I had takedown I had stool pour out of my vagina. I had a redo in May with Dr. Remzi and hoping I can have takedown in the next few months. As far as symptoms, all I had was drainage, but I always felt great. I need to wear a thick pad, but that's because of the mucous from my tush. I also take a low dose of antibiotic everyday, otherwise I was getting UTI's.
D
L lixxieMember
Thanks for the responses.

I do think I sit in the mild category, ie. its more like discharge tinted with fecal matter, rather than being full-on pouch output coming out of the vagina.

I'm yet to discuss treatment options with my doc, but like you CJB, I don't want to risk my functioning pouch. How long have you managed with it? I do wonder if left untreated is it likely to get worse?

I guess I can discuss this all with my doc. Thanks again for the info.

Ta.
L
CJBCJBMember
Hi again,
I've had my fistula for about 5 years now. It hasn't gotten worse. And my surgeon says that it could just stay like this forever, as long as it is not causing me problems.It has really stayed very consistent over the last 5 years. The first year was the only time I noticed up and downs. I can only presume that it is similar to a hole in your ear for an earring. After a while the hole is there to stay and the inner lining is all healed up.
I never have actual stool leaking from my vagina either.I guess my fistula tract is very small, or is in an optimal location. I do have air pass through my vagina. Only when I am lying down though. As weird as this may sound, I like having this "air valve", since most j-pouchers can't pass gas whenever they like.

Take care,
CJ
CJB
C Colleen2001Member
Hi lixxie,
So sorry that you have joined the dreaded fistula club. I had a RV fistula that reared it's ugly head about a year ago. I had a healthy, happy pouch for 10 years prior to this occurrence. It started with gas and progressed to stool. It was never extremely heavy, but irritating enough for me to have more surgery. The entire area was completely irritated and raw from the passage of stool. It was NOT fun. I could not even imagine having marital relations, which was one of the deciding factors for having the repair.

I am now 2 months post-op, doing well, and keeping my fingers crossed that this will be the end of it.

Good luck. If you would like more details, I would be happy to share the long version. Just shoot me a PM.

Best of luck!!

Colleen
C
L lixxieMember
Thanks Colleen.

I had a rather rigorous EUA the other week (was pretty sore, and had some bleeding/tenderness for about a week following).

The post-op report (that I'm supposed to hand over to my GP, and which I now can't find!) said some thing like 'diagnosis: vaginal fistula?' with the question mark. The notes said they couldn't find the tract, but noticed inflammation and induration at the posterior of the vagina. They took biopsies of that and in the pouch.

Since I was waiting for the EUA, my symptoms had improved over the 6 or 8 weeks leading up to it. Can fistula's heal themselves!? I was also on penicillin for strep throat the week leading up, not sure if that would effect anything.

I'm guessing that if they can't find it, they can't operate on it! So maybe drugs are an option, I think they were looking for Crohns with the biopsies.

I have an appointment with my surgeon in a few weeks, and will have plenty of questions.

Thanks again for the help.
L
n/an/aMember
Hey lixxie, it sounds like your RVF is quite small. Or in the process of healing? Did you have an MRI done? That's how mine was finally found.

Most of the time, my drainage is what I'd consider light. However, if I'm "holding it (my poo)" for too long, more comes out of the fistula hole. There is air from time to time, nothing embarassing. The outside hole is just outside the vag. opening. I wear a panty liner 24/7, and I also stick a makeup remover pad (cotton round) on it if I'm having a heavier day. I take antibiotics for both the fistula and for pouchitis.

I've had my jpouch 19 years, this appeared about 1.5 years ago. In June I had a seton put in: this was to prevent branching, and to help it heal. I like CJB's explanation, comparing it to an ear piercing - wish I could thread a string soaked in rubbing alcohol through the fistula like I remember doing with my ears to help them heal! My doc (at CC) told me this type of fistula will NOT heal. I think that's because mine's got a large angle to it.

I go back to the surgeon next June to see how it's going. She thought the seton would be in for 3-4 more years. She offered up a pouch redo, or a pouch removal, but even then said there's no guarantee the seton would go away. She didn't sound confident that any other type of fistula surgery would work on this particular one.

Really, this will sound selfish, but the only problem I have is that marital relations are not possible, at least not at this time.

Good luck with yours - fingers crossed that it healed on its own!
n/a
K KatieCamMember
Hi there,

This might seem like a very strange question, but I'm currently mid fistula repair, I've had 1 attempt that failed then had a diverting ileostomy and 2nd attempt at repair, I'm waiting to see if this has been a success and am having a EUA on 4th oct. it's killing me not knowing if it's worked this time, as there is nothing to pass through the fistula because of the ileo. But I have a question and wondering if any of you can help, so, when I am on my period, would it pass through the fistula and come out of my bottom???
K
CJBCJBMember
Katie,

In general, no, your period should not come out of your bum. The pressure in your intestines is much higher than the pressure in your vagina, and that is why the fluids and air usually pass from intestine to vagina.

Nancy Ann,

Is it the seton that is putting a damper on your "marital relations". I've had a small fistula for 4 or 5 years now and it doesn't bother me (well, the idea of having a fistula bothers me plenty, of course Wink. My surgeon has said that sex should not cause any harm to the fistula. Especially once the epithelial cells have lined the fistula tract (you know, the earring hole has healed). I believe at that point the chance for having the fistula heal without surgery is near impossible. I never had the seton, maybe because my opening is higher up in my vagina. That also might be why it is not very bothersome to me.

How weird would this be if we were all suffering alone with a RV fistula and didn't have this board to share our common experiences. I've told some of my fiends and family about my fistula and it blows their mind that the body could even do something like that.

Take care,
CJ
CJB
fqfqMember
Antibiotics CAN help fistulas and fistula drainage. of course it depends on how complex the fistula is, and the type/cause of fistula. i have heard of some fistulas healing with antibiotics, and in the case of crohn's fistulas, antibiotics, remicade and humira biologics can help. i have a tiny rv fistula and have been taking antibiotics for a couple months and i do notice a difference. i don't think it is common, but it is possible for rv fistula to partially/fully heal on antibiotics/meds. a lot of fistulas do require surgery, but there are some that heal with conservative treatment. my doc said that antibiotics are the first line of treatment for fistulas, unless your fistula is really big, then they would probably operate. fistulas are often a result of inflammation/infection so the antibiotics help with that so the fistula can shrink, or at least so the area is not infected. the tissue should be healthy and free of infection, ideally, before they do fistula surgery anyway.
it is also possible you may have had vaginosis or inflammation in the pouch/vaginal area that was healed with antibiotic use. in some cases, fistula may be very hard to find. but if your symptoms are manageable and/or treatable, and they don't think you have one, that is great news! maybe it was so tiny, it healed!
fq
Last edited by fq
L Lou_LouMember
Hi, I've had mine for about 7 months now, I seem to have good weeks and not so good weeks where I get more discomfort and it feels more inflamed etc.. It is quite small also and only really produces output when I empty the pouch or am needing to go but am holding on but again only a small amount. I do worry bout it getting worse, I've noticed some people mention having a seaton to stop it branching, I guess that's my main concern but I don't really understand how they heal with the seaton in or how they can possibly heal at all given the possible risk of of branching.. I have to admit Im considering living with it or at least until things get worse because i feel i have no option but lately I am really struggling mentally with allot of fear and quite bad depression. Frowner
L
fqfqMember
again, EVERY fistula is different and may respond differently to different treatments. a seton may be left in for some time to allow drainage to continue, but then may be removed later for complete closure. yes, it is definitely very depressing to live with. but there are success stories of fistulas healing or becoming manageable with meds, surgery, etc. do not lose hope. some fistulas do branch, others remain as is. it varies so much and depends on the type and cause of fistula. crohn's fistulas are more persistent and can recur. there are other types of fistulas that may result from surgery or obsetetric/childbirth trauma. they CAN heal. it may take a long time.

please remember:

fistulas are relatively rare, so there is not enough data on them. they are very diverse, no 2 are the same. do not think yours will follow the same path as someone else's. this is what my doc says. there are many stories where fistula has been repaired surgically or healed medically or shrunk enough to be livable. there are options.
fq
n/an/aMember
CJB, yeah, the fistula interferes w/marital relations. Before the seton was in, Dr. Shen said it was OK to have MRs, that it wouldn't hurt the fistula, but that it could be painful. After the seton was in, I got the same info. But we haven't been trying, because the outside hole (outside the vag) hurts if it gets tugged so I can only imagine how painful it would be during I/C. I am looking forward (a couple years) to having the seton out. We will give MRs a try one of these days, though...
n/a
L lixxieMember
So a little update (I know when searching through old threads its nice to hear how things were resolved.)

I had my post-EUA appointment with my surgeon. He said they couldn't find a fistula, and that they did have a good look. He also said there were no signs of Crohns in the biopsies.

This is obviously good news, but also confusing for me because of my fistula-like symptoms.

As my symptoms have become light-to-non-existent over the last couple of months, the consensus is to leave things be unless symptoms return. In that case, the possibilities would be MRI, gyno consult or another EUA.

I suspect he thinks its a gyno issue and nothing to do with my pouch, and that the gyno issue has resolved/healed itself.

I'm not sold on this as I've been a lady all my life, and know what is and what isn't normal down there. My suspicion is that the fistula was small all along and has resolved itself/gone dormant, with a little help from the antibiotics (for strep throat) I was on a few weeks back. But he says that in his experience, fistula's don't heal themselves, so who knows.

Good news is no fistula repairs, procedures, etc. needed.
L
CJBCJBMember
Lixxie,
Thanks for the update. I can tell you that my fistula is pretty tiny also. Some times (for reasons unknown to me) it is almost like it has closed up. There is almost no leakage. But other times, my fistula feels the need to remind me that "fistulas never heal, ha ha ha (evil laugh)". It's frustrating when they can't find the tract - they couldn't find mine either. But I didn't have a MRI or anything - only had a liquid dye substance inserted in to my pouch as they waited and hoped to see it come out of my vagina on an x-ray. I didn't care whether they found it or not. It was so obvious to me what was going on down there.
The anti-biotics do in fact help the fistula because the stool is more formed when you are on them and that lessens the chances for leakage. Hopefully you will be able to manage this small inconvenience as I have.
Not ideal, but if your pouch is otherwise healthy than it is a price we have to pay (as if we haven't paid enough already!).
Take care,
C-jay
CJB
L lixxieMember
quote:
"fistulas never heal, ha ha ha (evil laugh)"

Ha, so true. As if to prove that point, I had symptoms that evening after the doc visit!

Thanks Cjay, I think we have a lot in common. And the fact you've been living with it makes me feel more comfortable just letting it be. My main concern was really that things could 'fester' and get worse. But I'm happy to put up with the minor inconvienience, especially when compared to the much more severe issues some j-pouchers have to deal with.

I have an otherwise healthy pouch, well functioning pouch, so I really am lucky.

Thanks again everyone for the tips. Though I feel sometimes going into the doc's armed with all the knowledge and correct terminology makes him suspect I'm some kind of hypochondriac! Made worse when he couldn't access the images from my last scope, and I said I had them on my phone! Months ago I had taken a photo of the post-op report for my records, and I haven't cleared my phone in ages. I think he thinks I walk around with images of the inside of my j-pouch on purpose. :S
L
L lixxieMember
Another update.

Fistula activity has been the same, patchy. Sometimes non-existent, sometimes making presence known! Generally though, very light and manageable.

I had a routine scope a few weeks back. Again they kept an eye out for my mystery fistula, and it managed to avoid detection, again. There is 'inflammation' and some kind of area of 'depression' which they assume has something to do with it.

The doc said because of location, a seton would not be useful. I was prescribed a month of flagl and cipro to see what it could do. Symptoms seemed to ease for the month, but have appear to have restarted since I finished the course.

So, same story as Oct '13, no action is recommended. Just live with it, and come back if it's causing trouble.

It's been a couple of years now, and symptoms have been relatively consistent. Here's hoping it stays that way!
L
CJBCJBMember
Thanks for the update! I am also still in the same boat. My fistula is now about 8 years old and nothing has changed. For some reason I get more leakage now and if I am holding my poop, I can sometimes feel a small gush come through the fistula to my vagina. But very small amount of output, so it's gross but still very manageable.
What can we do but stay positive, and hope the pouch keeps working despite the extra holes and tunnels we have developed?
I find it so comforting just go know that I am not the only one living like this.

Thanks to all of the fistula girls.
C-jay
CJB
MahshelleyMahshelleyMember
So glad to have found this thread, as I'm in the midst of dealing with my own rv fistula. My doctor told me he sees about 2 of these a year, so it's hard to find anyone who really knows a lot about them. Glad you guys know how awful they are. (But sorry you have to know too)

Did any of you experience cyst like things grow in the area of your fistula? That's what started this whole debacle is these painful "cysts" that sat against my pouch. Gyno took them out/drained them and it must have opened the fistula channel because now I have discharge and cyst things. FUN.

Just wondering if anyone else developed that? I have a seton in place for the time being until inflammation is gone down, then the doctor is going to close it. We shall see how this goes.
Mahshelley
L lhh65Member
Glad I found this updated post, because I am trying to figure out if I might have a fistula (or am just crazy) -- and if I should contact one of my surgeons about it.

Quick synopsis: After colectomy, takedown, hernia repair in 2011 and 2012, with many complications after last two surgeries, I had to deal with huge uterine fibroids that got a lot worse/bigger last summer, leading to complete hysterectomy this past October. The surgery was done by daVinci and everything removed vaginally. It was very traumatic for my body because the fibroids were so big, surgery was long and difficult and I ended up with tears in vaginal area that took a long time to heal. More complications after that surgery, including a hematoma.
So .... then I start having vaginal discharge in late fall/early winter...and it's continued. I start thinking I have a fistula (caused by difficult surgery) because while the discharge is mainly yellow with some brownish tinge, a few times there has been stool where there shouldn't be, but I try to convince myself it came from somewhere else, not vaginally.
I go to see my gyno a few months ago (she did not not do the surgery,as I needed to be at med center where my J-pouch surgeon was and because it was expected to be difficult surgery). She sees discharge, irritation, does cultures...they show nothing. She says it must be granulation tissue from the scarring/healing of vaginal area post-surgery.
I see my GI doc, and he seems to think fistula possible, does pouch scope, sees a few small ulcers, not much else. He seems to want to help but thinks I should see the gyno-oncologist surgeon who did the hysterectomy. Suggests I need MRI.
For some reason, I'm hesitating, not wanting to go back to the surgeon. Like some of you mention, will he think I'm a hypochondriac. Am I?! It's just been so much, so many doctors, so many problems. Do I just go back to my gyno and let her deal with it?
But I, too, must wear a pantiliner every day. Could I live with this? Sure, I guess...though it's getting a bit worse.
Could it just be granulated tissue, as my gyno said?

ANY input will be appreciated. I know I need to do something.


Thanks so much,
Laurie
L
Last edited by lhh65
n/an/aMember
I'd recommend asking your GI doc - or your colorectal surgeon - or your GP - to order you a pelvic MRI. Scopes do not always catch the fistula hole, it can be very small and with all the folds in there it can be somewhat hidden. GIs generally pass fistula patients on to CR surgeons, in my experience.

What you are describing does sound like a fistula, but an MRI can give you a better idea. I don't know anything about cultures or granulation tissue, etc. (sorry)...

I hear you on the concern of sounding like a hypochondriac - I had symptoms off and on for years - asked my surgeon if it could be a fistula and he LAUGHED at me and said if I had a fistula he would be able to see it. SO not true, especially for an RV fistula. I finally got my GP to order the pelvic MRI after I developed an abscess and was a total mess; the fistula was finally found, I went to Cleveland and now have a seton.

You should not let this go - you want to know what it is and explore options to treat it if it is indeed a fistula.

Let us know what's next for you...
n/a
MahshelleyMahshelleyMember
Fistulas are hard to find. I had three docs examine me before they finally found it. I know what you mean about not wanting to feel like a hypochondriac but it's your health. And us jpouchers have lots of issues. So I'd be a squeaky wheel until you get answers. Especially if things aren't normal. OBGYN don't have the colorectal experience they should have dealing with this stuff. See your colorectal surgeon. It doesn't hurt to talk to a specialist. I did and I'm finally getting answers (albeit not the best news but it's news. )
Mahshelley
LHettiLHettiMember
I hate fistulas!

I had at least of three of them (I was up to 3 setons at one point). The first one showed up in 2001. Finally in 2010 I started Remicade and that did help initially to close the holes. I was told I have complex fistulas (the really bad ones). In April I had to go to perm. ileo. because my fistulas and cuff were too horrible and my GI was very concerned (even mentioning the risk of cancer in the fistula tracks). The fistulas are what changed my diagnosis to Crohn's.

Keep up the bulking foods! I also did lots of sitz baths to keep everything very clean. I really didn't want to the perm. ileo. , but I'm so glad to be able to swim this year and not have to worry about wearing a maxi pad to catch all the fistula drainage and stay on the side of the pool. I hope yours never progress to the point of mine.

Laura
LHetti
L lixxieMember

Another update. (Jeez, did I start this thread in 2012!? That's depressing.)

Me and my fistula were living life until Sept '16 when I had a catch-up with surgeon (a different one to who I normally see). I described the symptoms and how I was just living with it. He said I was in my 30s and 'living with' something for the next 30-40 years is a long time. I tended to agree!

So I had another EUA last week. I will see surgeon to review findings in a couple of weeks, but reading the post-op report (written mostly in surgeon sanskrit!) this is what it found:

CPAA normal - no stenosis
mild cuffitis
unable to intubate 'efferent rims' (!?)
biopsies taken - cuff and pouch
inflammation low vagina with some slough and 'cutant bleed' (!?)
on region of (something) vagina (something) to location of CPAA –> healthy thick tissue
no fistula identified

So my stealthy fistula eludes diagnosis once again. Good news, they can't find it then no surgery. Bad news, they can't find it, they can't fix it. Sigh.

If anyone has any questions I should ask the surgeon, that would be helpful.

Thanks!

L
n/an/aMember

Hi Lixxie - thanks for the update.   5 years!  I'm sure you have your list of questions ready to go.   Are they still going to continue looking for a fistula?  Is the surgeon going to go in, look, and if he can see it, repair it?  What procedure would he perform if he found the fistula?  Chances of success, etc.   Are you still having symptoms? 

I'm still living w/my fistula, have had the seton 5 years now.   I'm 60 now and simply am not feeling an urgent need to go through surgeries in an attempt to fix it.  If I were in my 30's, I'd probably have different thoughts, though, idk.   The symptoms of my fistula are about the same, waxing and waning.  

BTW, my last EUA a year ago resulted in a positive diagnosis for Crohn's, based on the biopsies.  However, I don't feel as though I have any Crohn's symptoms (knock on wood), except for the fistula.  Like you, cuffitis as well, and as always, some inflammation in pouch, but nothing that warrants antibiotics. 

Keep us updated, and good luck!

Nancy

n/a
L lixxieMember

Another update!

At my follow-up with the surgeon after the February EUA, she said they couldn't find a fistula. I asked her flat out "Do they think its there but they can't find it, or do they think there isn't one?" She said they don't believe I have one. Pretty peeved to hear that, and felt very dismissed.

She gave me some cream to try *eye roll* and said to come back in six weeks. So at the next visit I brought photos of toilet tissue showing the discharge (gross but effective). Finally it clicked with them that I wasn't making this up. I also asked whether an MRI was worth doing. Surgeon thought yes, and it highlighted an area for them to focus.

Scheduled another EUA, done yesterday, and wait for it, they found the fistula! Five years of stealthily evading detection, and he's been found. Apparently quite low down in both the pouch end and the vaginal end. Surgeon is recommending a fix through the vaginal side. (Only had a 2 min conversation in recovery, will found out more at follow-up appointment).

Also, I got a surprise seton! I had no idea this was on the cards, I thought the EUA was just a look-see. Luckily I knew what a seton was and its purpose, so I didn't freak out too much. But, a little heads up would've been nice, doc!

 

L
n/an/aMember

My CR  surgeon told me she would not consider any surgical "fixes" until a Seton had been in a while.  Helps heal the inside skin. I agree, though,  that  a heads up would have been considerate.  Quite an ordeal you've been through!  I hope you can get this dealt with now. Keep us updated on what type of fix your surgeon is thinking about? 

n/a
L lixxieMember

Another update.

I'm scheduled for mucosal flap advancement surgery in the next month or so. Surgeons will wait til they are in there before deciding whether to do via pouch or vaginally. They said the success rate is 60% (or glass half empty, the failure rate is 40%. Sad face).

Seton is fine. Awkward and sore for the first few weeks, but now it's just life. Vag output seems to be worse with the seton, which is worrying. I've read that if the fix fails, then the symptoms can be worse than before surgery. So that's fun to think about. Another sad face.

The current plan is:

- mucosal flap advancement
- if that fails, then they redo through the reverse side
- if that fails, then we'll discuss more invasive fixes

I've repeatedly tested negatively to crohns but a lot of what you read about fistulas is crohns related, so I wonder if it's not worth trying some crohns drug treatments to help aid healing? A question for my doc.

Anyway, that's me right now. Happy 2018!

L
L lixxieMember

Mucosal advancement flap surgery was done last Thursday. Pouch-side fix.

Yesterday I had discharge, so it appears to have failed. But for 5 glorious days I was ‘normal’. Pretty devo. All this pain and time off work for nothing. Only to do it all again with a vag-side fix.

Butt pain seems to have increased the last day or so, I guess related to failure. No fever or anything, so I guess I’ll just ride it out til post-op appointment in a couple of weeks.

L

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