Recto-Vaginal Fistulas - Part 5

Bea & Flower,

I have a loop ileostomy and haven't experienced any regular-type bowel movements--just that awful mucus. So about rectal mucus...I know it is definitely coming from the rectal side because of the smell and amount of it (too much to be vaginal discharge). It is sometimes brownish but other times clear to a tan color. Sometimes it is thick and sometimes very runny. Sorry if I am being too graphic but there is always a smell and it passes pretty much the same as a bm with an urge to go and all. My doctor told me nothing about this phenomenon...guess he expected the stoma nurse to tell me. Thank goodness for the internet!

So now I am almost 4 weeks post op and seeing the mucus on the wrong side...I'm devastated. I've been avoiding coming back to this site because I'm forced to admit that my repair is not looking good. And I have no idea where to go from here.

I'm encouraged by all of you being so brave. Thank you again for the kind words.

Posie

Posie

Nothing can prepare you for the despair of a failed repair. I howl, sob and rage and then take to my bed under a dark cloud. It is awful and I'm afraid I even resent people who have healed because I can't bear it. Therre is something awful about your body letting you down and you think why won't it heal? Plus there is the wind up of it seeming to work at first and then gradually breaking down. And well meaning people say - even if it has started to come through that maybe it will heal again. Without a colostomy or ileostomy there is no chance of that. I hate it failing for you.

Re the mucus thank you for being so graphic - this is about the only place you can be. It matches my experience except mine is more consistently tan/caramel coloured and also fairly consistent in consistency (loose). On Wednesday I saw my consultant again and I asked her about the mucous colour. She was very cautious and said that she would wait until she had checked things on 30 November. (She also asked about the stoma to see it was working OK - so maybe it might mean something around that) I think clear is most normal but I have found other reports (from the UK COlostomy Association) of it being brown, cream or pale coloured and/or foul smelling even when they have cut end colostomys. In your case, it is possible that some stuff is getting through from the ileostomy. Even tiny amounts would be enough ot make it smell and colour it. When I had a loop colostomy quite a lot got through and I had normal bms most days. It took about 3 months for the bowel swelling to reduce enough to allow this so it might increase for you as time goes on.

All I can say is that the ileostomy will help - better with it, than not. And all is not lost - there can be other attempts. As you will realise, one of the issues is how much you can handle, but really, it can work even after failed attempts. I can't remember which clinic you are with and as I am based in the UK I'm not much help, but I would strongly recommend going to the best person you can as soon as you can (maybe you are there already). I don't know if mine has worked this time but it is better than before. Hang in there and vent when you want to. I also need time away from this site as it can get you down as well. So we'll understand if we don't hear from you for a bit but I hope you will keep in touch.

FLower - hope you are ok - thank you for your report on the mucus too. It all helps.

Bea xx

Hey All,

Would anyone mind giving me a referral for a good doc at the Cleveland Clinic? I'm getting a second opinion...again :-)

Thank you!

-Posie

Hi Posie
I haven't replied before because I can't help you with your quest as I'm in the UK.

Hope you are OK though. I am feeling much better and recovered from my op. However, don't know yet if it has worked. I've got an examination on 7 December which will hopefully tell me.

Penny, Flower - hope you are OK too. Any news Flower?

Best wishes to all.

Bea

new to this site--- but I took 26 years to finally get my rectal vag fistula repaired by a colorectal surgeon he used the martius flap repair. I am 4 weeks post op now still pass gas and liquid diareha ( can't spell that ). I was seen by him and he said the flap is not done healing yet and to hope for the best. the amt of gas i less than pre suregery and depending on the day the discharge from vagina is less. But I just don't think this is gonna work any one out there had any similar experience ? with the late healing and all? forgot to mention at surgery I had a large hemotoma and was anemic at 1 week post surgery needed a transfusion. so I'm sure tht delayed the healing . I frusterated it took 26 years to finally confront this issue and it really is a much tougher fix than I thought. altho the OB that referred me to the colo rectal said it was complex -- guess so

Hi Nancy,
You are very brave to face an operation after living with a fistula for so many years. I am sorry you had to find us but those of us who post do find it is helpful.

My last repair included a Martius type graft or flap. I know it can mean the use of fatty tissue or the use of muscle. Which was yours? Mine was a fatty tissue one.

I am afraid the fistulas are difficult to heal. It can take several attempts. If the first repair doesn't work then usually they suggest a temporary colostomy as it is the bowel working which makes healing difficult. AS you can imagine the pressure of the muscles on the repair strains it and of course the stuff inside the bowel is full of bacteria and this causes an infection. It is the infection which stops healing. I'm afraid from bitter experience that once the repair starts to fail it is highly unlikely it will heal. The only hope is with anitbiotics, but even then it is unlikely. It is a soul destroying experience and it messes with your head. You have my sympathy. If you can bear to trawl through our posts you should see the sort of experiences we have had.

You don't say how/why your fistula was formed and how much stuff was coming through before the op?

Keep us posted on your progress. I hope you will be lucky. If you aren't you need to find the best possible surgeon traight away. I'm not in the US so I can't help but again some of the posts on this site have mentioned their clinics.

Take care.

Beax

penguin 7 My fistula started 26 yrs ago result of lrg baby started with air only then progresed to gas and later stool. I had 3 more children after the first and each one progressed the fistula just a little bit more. I then lost a lot of weight and the problem became frequent. I had to face reality so I went to gyno who immediatley visualized the fistula ( the size of a Q tip) she sent me to a colorectal person. He wasent sure what route he was gonna take with the surgery untill he got in there. He talked with me about each of posibilities and was very kind. Apparently the martius graft became the best option. For the 1st 3-4 weeks (post op)I passed gas from vagina and hed 2 occasions of diarehea. But it will be 1 week tomorrow since I have had any symptoms and I have hope of the surgery actually to have worked. Every trip to the bathroom is scarey experience but so far so good. Since the surgery seems to be working I am staying off work longer to ensure I am carefull--- I have read all the threads out there and have come to realize what a true miracle I will have been granted if I pull this surgey off and can be sympton free--- But on the other hand it took me 26 years to come to terms of my problem the last 2-3 years the symptoms were very acute-- so I have done my time so to speak with this terrible affliction. I wish Drs. would directly ask people if they are experiencing any of the symptoms RVF I think a lot of people do but like myself are way to embarassed to deal with it so a nudge from their gyn of reg DR. who does the yearly checks could greatly help alot of people. anyhow the cost of surgery for me is coverd by my health ins. thank god ! But I have run out all my vac and sick time by the time this ordeal is over. But hopefully it will work( fingers crossed) and prayers too. not many people have even heard of this - even some medical professionals- I hope my story ends well and can ease people minds that it can take time to heal but it can happen!!! I'll write updates so others can mabey benefit nancy

went to another post op today--- I am healing!!!! I have had no gas or stool or anything for 3 plus weeks now ( i had both of those problems gas and stool through the martius flap repair for the 1 st 3 weeks post op) my Dr was absolutley correct when he told me to be patient it would heal Just wanted to update people in case there is someone out there needing reassurance - my surgery to fix a 26 yr old rectal / vaginal fistula worked on the first try !!! I'm released to go back to work now so I'm going to continue to be carefull and prayerfull I'm hoping to finish up healing in the next 3-4 weeks. Like everyone has advised go to a colorectal person (dr) a OB GYN is generally not qualified to do the repair but can usually diagnose and refer you to a good colo rectal surgeon. After surgery do not get constipated post op but do not use so much laxative you are explosive either. Do not lift more than 10 lbs , keep the area clean, and plan on being off from work ( cause you really can't sit for a length of time) for at least 6 weeks . and even if you get some gas or stool through the repair it does not mean the repair has failed. Do let you Dr know though so you can be on an antibiotic. Have your self checked for anemia ( low iron) as if you have that your body can't repair itself. Of course you can't take an iron supplement as the iron will constipate you but your Dr may want to give you a blood transfusion. Don,t be afraid to call your dr with questions-- Of course this stuff relates to me and my situation. After all the web searching I did I wasent able to find much in the way of positive stories or practical advise so I hope this helps someone Nancy

Nancy,,
I'm really pleased for you. That is great news and a good message for those who might come to this site for the first time. The repairs can work first time. WHich means that it isn't always a long term problem.

I've just had an examination under general anaesthetic and still have a fistula. They have put in a seton stitch to help drainage but I don't know what the prognosis is yet. I'm guessing the fistual is smaller and more of an anal fistula than an RVF - but I don't know if anyone else has experience of a seton stitch? I've looked on the internet and it is not the 'band' type which they tighten but a stitch to keep the fistula open to stop infection building up. I don't know what happens next. Will be seen in clinic in 6 weeks time.

Posie, Flower, beegirl, Penny - I hope you are OK. Any news?

Bea

Bea----- thank you for the kindness and for responding. It is frusterating to have to wait and see what happens if a surgery has worked or not. I sure do hope your seton stitch works out and you can be rid of this problem. I was 18 when I first had my problems altho minor for several years I did spend much time embarassed about my problem when it became much worse ( the last ten years were awfull) finally got brave faced my problem and got surgery. But I am 42 now so I spent more time with this affliction than without it. It is almost strange to not worry about noises ( from you know where). Now of course I can just kick myself for not seeking help sooner -- I really really wish MD's were more direct with their questions post delivery especially after a terrible delivery like I had. My colo rectal surgeon says he suspects there are lots and lots of women out there with this problem to embarrassed to get help. And although I have not had any children for 14 years I do not remember ever reading anything in any of those - what to expect when you are expecting type books - talking about a RVF. Mabey they do now but as of 14 years ago there wasent any info out there.... You feel like such freak and talking about wasent something I could do but if a DR would have ever asked after a delivery I would have realized it was a uncommon but possible affliction . If it were not for the internet I would not have known about RVF---- I had a nurse friend (RN) who had never heard of this problem and told me she was sure the stool came from my rectum not my vagina. She wasent being mean she just didnt know and was trying to reassure me. But the reality of it is I should have sought help years ago and put my embarrassment aside and taken better care and resposibility for myself a long time ago....Honestly BEA I wish you all the best and hope everything works out for you. I will continue to check in on this website cause the other reality I need to face is the fact a reoccurance or new fistula could form.

Nancy

Happy New Year to everyone. I am much the same as before just waiting for my next hospital appointment on 19th to find out what the next plan of campaign is.

Nancy - how are you? Is the healing going well?

Posie - did you find a new Dr? What news?

Beegirl, Penny, CJ, Teya and others - would love to hear any news - hope everyone is well. If there are any good news stories would be good to hear them.

Bea x

Hello everyone-i also have a RVF. I delivered a sunnyside up baby which resulted in a 4th degree tear about 7 months ago. 8 initially went back to the OBs office around 6 weeks but apparently they couldn't see anything. I am still having symptoms (mainly gas and a slight brown/yellow discharge after a BM) I took it upon myself to see a colorectal surgeon and go in a few weeks. I am beyond nervous. I am 24 and am praying for a successful fix. Any advice u could give me would be appreciated as far as questions to be sure to ask and what the initial visits are typically like? After this ordeal if a 2nd baby comes around, c section for sure!! Thanks for answering!

Katie

Hi Katie,
I'm sorry to hear that you have an RVF - from what you describe that does sound like an RVF. I'm guessing that you may have read some of the other posts on this thread so there is already quite aa bit of information out there.

One thing that you may realise is that your symptoms are relatively minor at the moment which is good news. On the other hand there is a risk that any attempt to repair you could make it worse. I am not saying that you should accept it but I would say to consider that possibility. As a result of my RVF I have had a colostomy for 2 years, I have required quite sgnificant surgery last year to repair the damage caused by previous surgery and I don't know if I will ever be fixed. Also other people on this site have found that after treatment they have control issues or still have a fistula even if it is smaller.

That said, those of us who post regularly on this site are the worse case scenarios. Many people get fixed after the first or second attempt. The fact that your RVF is caused by childbirth also makes success more likely, apparently.

Re your consultant - try to go to the best you can find first time. Every surgery you have causes scar tissue which makes each attempt harder and harder - so try and get the best chance first time. As you have already booked an appt don't worry but use the opportunity to be confident in them. It's your body they are cutting up and you need to make sure you get the best hands you can. Ask them how many repairs they have done, what the risks are and what are the chances of success. The risks they mention should include: recurrence, bleeding, infection and damage to the anal spincter muscles (which are what you use to copntrol your BMs). They should at least cover the fact that it might not be successful. In most cases the treatment offered will be a vaginal flap repair or advancement flap repair - these are either the same or very similar techniques. My understanding is that this is the best first option - a good proportion of people are repaired via this technique and it is a relatively minor procedure.

If you can make a judgement try and find out how synpathetic they are to your situation and how important they think it is you get fixed. My previous hospital treated me more like an annoyance compared to the important work they were doing treating cancer patients. While what we have is not life threatening it is distressing and if someone is going to treat you then you need to be sure that they are going to give it their best shot. I'd also ask about aftercare - both advice on what you should do, and support, wht to do if things go wrong. The problem with the flap repairs is that they are minor surgery but careful monitoring afterwards can help with it's success. Also check that you will be on antibiotics after the operation.

I hope this helps. please remember that I have had 5 repairs so I'm a bit jaded by my experience. Many people get sorted first time. If it works out please come back and tell us so others like you hear the success stories too.

I wish you the very best iof luck. One last thought - make sure someone is with you in the consultation to help you get the answers you need and to listen.

Bea

Hi Bea
thanks for ur advice-many helpful tips! I will write back after my appt to fill you in. Its nice to know there is a support site like this since many can't understand! I wonder why they think its easier to fix after childbirth? Hope the next couple of weeks treat u well

~katie

Katie
I think if the RVF is caused by chidbirth it means that the reason for it forming is physical - you have no predisposition to infection in that part of the body. Mine was foromed after I got a Bartolin cyst which became an abcess so my body clearly has a tendency towards infection in that part of the body (though not elsewhere). The single thing which causes the repairs to fail is infection - infected tissue won't heal. So you can see why someone with a greater tendency to infection might have a harder time getting fixed. This is also the reason for taking antibiotics after surgery as a protection against infection forming.

Hope this helps. Good luck and let us know how you get on.

Bea