Info on Recto Vaginal Fistulas

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My Info:

Dini Merz
E-Mail:
dinimerz@cox.net

Site Purpose
This site is dedicated to anyone who has suffered a recto-vaginal fistula that is the result of childbirth. I hope my experience can be of use to you, so that you don't feel so alone and disheartened. Recto vaginal fistulae are embarrassing, frustrating, emotionally-wrenching, and it is difficult for anyone who hasn't experienced one to understand. On top of that, the information that is available is scarce, sometimes alarming, and often inaccurate. I am not a medical expert, but I will do my best to accurately reflect what I know and learned through my research and experience. At the end of the page, I have assembled a list of questions I suggest you ask your doctor before deciding which course of corrective action you wish to pursue.

What is a rectovaginal fistula?
An opening that forms in the tissue between the rectum and vaginal that gets lined with epithelial cells. (It resembles an empty blood vessel.) Sometimes it is so small that only gas passes. Sometimes it is larger so that feces pass too.


How is it caused?
Usually several of the following factors combine to lead to a fistula condition:

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A large baby, and a small vaginal opening
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Lots of pitocin during labor
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A large tear or a level 3 or higher episiotomy and a mid-line incision
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Forceps or another type of assisted, forced delivery
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Improper episiotomy repair
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Poor episotomy follow-up to detect puss and infection
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Infection of the stitches of your episiotomy or tear

How is it detected?
It is usually the patient that first notices a problem - either gas or feces passing from the vagina. It is uncomfortable, unmistakable, and uncontrollable. Others notice that they have feces coming from the vaginal opening occasionally or even regularly. You may get recurring urinary tract infections caused by unusual bacteria.

An experienced colorectal surgeon can feel for granulation in your rectum. This forms at both ends of the fistula opening. The doctor can sometimes pass a narrow instrument, called a probe, through the whole fistula. Other doctors can do a dye test to see if dye passes through the opening and then shows up on a scan.

Your OB or gynecologist is usually the first to deny the problem exists or to minimize it. (That is mainly because they are largely responsible for the condition.)

When and how can it be repaired?
There is a debate among doctors about this as well. Some say you must wait a mimimum period before pursuing repair options. The newer train of thought is that you only need to wait three months post-delivery. I had mine repaired at the three month mark. You should look for an experienced colo-rectal surgeon to do the repair. Look for someone who has performed at least 10 successful surgeries a year. DO NOT rely on your gynecologist or OB. Chances are that they have only RARELY successfully repaired this condition in the lifetime of their practice. (In fact, they probably cause more fistulae than repair them.)
There are two different categories of surgeries: a flap repair and a sphincteroplasty (a.k.a. peri-anal reconstruction). In a flap repair, the surgeon takes a flap of tissue from another part and patches over the fistula, or tries to "fill in" the fistula with something and burn the ends. Sometimes it works, sometimes it doesn't. (I think the success rate is about 65-70%, but you will need to do medline and webMD searches to get articles to learn more.)

The other surgery is a peri-anal reconstruction, or sphincteroplasty. For this, the surgeon will cut the fistula, and restructure all your muscles around the anus and vagina. The success for this is around 90%, but in 10% of the cases the surgery breaks down because of infection. If this happens, you will have to have a colostomy for 3-6 months until you heal. A colostomy means that your feces is rerouted to another opening, and attached to a bag that you periodically replace. A word of caution - whenever a fistula occurs at the lower end of the anal canal, it is much harder to repair with full continence.

For either surgical option, the proper prep and follow-up is necessary. Pre-surgery, you will need to flush out your intestines. You will have to fast for two days prior to surgery, and take several laxatives and enemas until you are cleaned out. (Use a squirt bottle to stay clean during this process. It will save you some of the irritation)

Post-surgery, you will be on a liquid diet for 2-4 days. After that, you may want to self-impose a low-residue diet for a week. You also will need to do three sitz baths a day and use a stool softener (like Colase) to avoid straining during a BM. (Colase is not habit forming.) In addition, you are absolutely not allowed to lift anything heavy for about a month after surgery, so you will need to get some help from family/friends with the baby - especially bathing a baby in a tub, which can be a big strain on your pelvic muscles, believe it or not.

It took me about two weeks to regain a decent amount of mobility, although I took a month off from work after surgery because I was so worried that I would screw up the surgery and have a relapse. However, another friend who had the same thing done was back at work after two weeks. You will most likely experience pinkish discharge for quite a while after surgery -- at least a few weeks. Your surgery is "draining", and this is ok and normal. However, if you suspect that the discharge is fecal, or you experience severe pain and/or a fever, call the surgeon IMMEDIATELY. DO NOT be embarrassed or think that you are bothering the doctor.

For most, the worst part of the whole thing is the bowel prep. The pain of the surgery is the equivalent of a c-section, which means that it was really not that bad after the first 4 days or so. (And you don't have to worry about gas pain as with a c-section.)

I have only heard of rare circumstances where a fistula heals on its own. I was told to stop breatfeeding by my OB to strengthen my vaginal floor to encourage it to heal on its own. There seems to be a debate among doctors as to whether this will really do the trick, but my colorectal surgeon told me that the chances of spontaneous healing post-nursing is rare.

For family and friends:
A rectovaginal fistula is a traumatic thing, and you will never know how it feels. Many women feel a combination of feeling dirty, depressed, angry and generally alone. I had difficulty enjoying even simple things, and since I experienced the fistula immediately following my delivery, my depression was aggravated by post-partem mood shifts. If the patient has to undergo a colostomy, it can be hvery demoralizing.

The best thing you can do is to listen, and research, research, research. Help the patient by providing a shoulder to cry on, plenty of distraction opportunities, and moral support to STAND UP to her doctors who may be side-stepping her questions. Keep telling her that it will eventually get better, but it takes time for everything to get repaired, healed etc. Help her to not be so hard on herself.

TO HUSBANDS: Most women I asked who had a recto vaginal fistula advised husbands not to push to have sex. It really hurts, and it is not fun to have intercourse when you have permanent irritation around your vagina. Find other ways to be intimate. You have your whole life to have sex once the problem is fixed!

LEGAL RECOVERY: Your chances of successfully recovering from your gyno/OB practice are state-specific and situation-specific. In general, proving liability in personal injury for this situation is difficult. You will need to prove that "but for" the gross negligence of your doctor, you would not have suffered a fistula. This is hard to do. Plus, most states have a statute of limitations that applies to personal injury claims. My advice is to consult an attorney if you wish, but first and foremost, concentrate on getting better and healing physically and emotionally. A psychologist will be far more helpful to you in the long run.

A NOTE REGARDING HYSTERECTOMIES

In some circumstances, a vaginal hysterectomy can lead to a fistula for the same types of reasons outlined above. The procedure to correct the fistula is the same. More than a dozen women have contacted me with a fistula that resulted from a hysterectomy. In other words, you are not crazy if you are experiencing these symptoms!!

What I learned:

Trust yourself. If you feel like you have a fistula, you probably do. No one likes to dream up this ailment.

Doctors are fallible, and don't like to admit mistakes. I learned that I am the customer, and they are the service provider. It is in your interest to be well informed, so do the research and get second and third opinions.

Ask the tough questions like: How many of these have you repaired successfully? What is the prep I have to do? Why does my research reveal something that is contrary to what you are saying? A good doctor will not be threatened by your questions.

Experienced colorectal surgeons are your best chance for success, along with impeccable pre and post surgery care. OBs and gynecologists will be of little assistance.

If you doctor makes you feel like this is no big deal, leave and find another group.

After surgery, it typically takes women two to three years to feel normal again. Sex will hurt for a while (up to a year or more), and if you are nursing, sex will definitely hurt more. (That doesn't mean you should stop nursing...do what is right for you and your baby first.) Don't listen to crazy OBs that tell you that they can "inject saline" to break up scar tissue so that sex is less painful. Only listen to the advice of your colorectal surgeon (who will tell you that the only thing that will help is time.)

Many women have more children via C-section. For me, the C-section process was a breeze, and though the recovery is a little more painful than vaginal delivery, you will find that it is a "piece of cake" compared to what you have been through with the fistula.

Don't worry, you are not alone! Feel free to write if you have any questions that you think I may be able to help answer, or if you just want to communicate with someone who has been through it. I'm happy to be a "fistula friend" -- someone to communicate with while you are going through it and have those embarrassing questions you hesitate to ask anyone else. I had a few "fistula friends" as I was going through my rough time, and it helped. (We haven't kept up after we all recovered, but that is expected.)

Further thoughts -- Try to think about what your doctor is saying critically - why is s/he saying this? What experience is s/he basing this on? We are no longer in the "doctor knows best" health care environment. It is your job to be well informed and most of all, consume all the information that is being told to you critically! For a great book to give you insight on medical decision-making and experience, read Atul Gawande's "Complications: A Surgeon's Notes on an Imperfect Science." It is a must read.

Suggested Questions

How many RV fistula have you successfully repaired in the lifetime of your practice? (Typically, a colorectal surgeon practicing in a populated area fixes about 10 a year.)

What is the average number of surgeries any one patient has to go through before she is completely rid of her fistula?

Can you show me a diagram of my perianal region and explain exactly what you will be doing during the surgery?

What is the best way to mitigate the chances of an infection, since we are dealing with the rectal region?

When can I start to resume "normal" activities, including lifting objects over 8 pounds, exercise etc.?

Would any of your other RV fistula patients be willing to speak with me or share their experiences with this problem with me?

What can I expect as far as spincter control even if I have a successful operation?

How does nursing affect my perianal region, and what are pros and cons to nursing through this operation and recovery period?

Other Resources:

* Other helpful sites, with references to other articles at the end are: http://www.obgmanagement.com/08_01/recvag.html

http://www.fascrs.org/coresubjects/2001/gregorcyk.html

http://www.emedicine.com/med/topic2745.htm

http://ics.toya.net.pl/31.htm

* For a link to help you find a colorectal surgeon in your area, visit

ascrs@fascrs.org.

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