My story about living with a recto-vaginal fistula

When it all started:

I had been living with what is known as a Recto-vaginal fistula (Obstetric fistula) for seven years. There was a “pin-sized” hole located between the walls of my vagina and rectum. As a result, I passed air and fecal matter through my vagina uncontrollably. The sound of air passing through my vagina was noisy and passing fecal matter, as you may think, was unhealthy and unsanitary and can cause numerous infections. It also had a foul smell and I frequently itched.

When I was 16 years old, a junior in high school I learned that I was pregnant. Because I was uninsured, I applied for general assistance and government insurance Medi-Cal. I was 2 weeks past my due date when I was induced on July 17th, 2004 at 6:30 AM. I delivered my child at 2:00 PM that same day. I pushed for an hour total and Julian was brought into this world weighing a total of 8 Lbs, 10 Oz, and 21 inches long. Due to his large body size, I had fourth degree tears. The doctor had to make an episiotomy in order to keep me from tearing even more then I already had. After the delivery, the doctor sewed me back together and I was sent home the following day. So, what went wrong? That’s the question I had.

I believe I suffered this condition due to a combination of such things: giving birth to a large baby (8 pounds, 10 ounces), considering how small I was (120 pounds), and at such a young age (16 years old), in which my body may not yet have been fully developed. Along with this, I had a prolonged pregnancy (two weeks late) and I had a rushed delivery due to an induced labor. Lastly, I had government health insurance, which could possibly be a factor to all this but, unable to prove it. Thus, all these factors put me at high risk for a Rectovaginal Fistula. Not to mention, I should have had a c-section rather then a vaginal delivery due to the size of the fetus compared to my body size.

During the time that I was living with a fistula, I was not as active as I used to be because I was always afraid I would pass gas loudly. The air that passed through was extremely loud and unpredictable and the fecal matter came in a liquid form with occasional small bits, usually after a soft stool. I had to clean myself more thoroughly then an average woman would. I used wet wipes after every stool and cleaned inside my vagina area with my pointer finger to make sure all the fecal matter had been removed. It took me about five minutes to wipe myself clean, but when my stool was soft, cleaning inside my vagina was just not sufficient enough. After soft bowel movements, I tended to leak leftover stool from my vagina for the rest of the day. Because of this, I had to wear a panti-liner at all times throughout the day. I had to use the restroom often throughout the day so that I could continue to remove and clean the remainder of the fecal matter that continued to leak during the day.

After speaking with my gynocologist in 2011 (in Santa Cruz, 7 years later), I was referred to Dr. Brian Waddle, a colorectal surgeon. Upon our consultation appointment, we scheduled a surgery for June 24th, 2011. The procedure was called a Vaginal Advancement Flap, in which the doctor sews the hole together with overlapping skin. The first week I felt normal again and thought that my life was back, until the second week of recovery. The symptoms that I was experiencing previously had reoccurred, but this time it was worse. To the doctor’s knowledge, the fistula acquired an abscess, which in turn caused a tract to form; thus creating additional holes; causing for more air and fecal matter to pass. I was in the middle of a summer class when I found out the surgery failed. Unfortunately, I had to withdraw from the class, as I was unable to focus academically. This first surgery put a damper in my studies, as you may know the cost of attending a University in California is pricey. Because Santa Cruz was convenient and because I felt that the doctor already knew my body, and the fact that I didn’t know of any other doctor who could help me at the time, I decided to go back to him for a second try. We scheduled the surgery for August 26th, 2011, one-month later. The second surgery had to be the one, so I thought. I made sure I did absolutely NOTHING that could possibly reduce my chances of healing and making this one successful. But the same thing happened again, a week later, the symptoms came back. The doctor told me he could not do anymore for me and said it would be best to see a colorectal surgeon at Stanford University in Palo Alto. So he referred me over, apologized for his failure and wished me good luck. I had to wait several weeks to obtain an insurance authorization to see the doctor in Stanford. Once the visit was approved, I waited several weeks until my appointment. While waiting, I noticed that the air and fecal matter passing through my vagina were more exaggerated then before having the two surgeries, believing that not only did the surgeries not work in my favor, but that the surgeries may have made the matters worse. I passed air and fecal matter more after this then before seeking treatment.

On October 10th, 2011 I finally had a consultation visit with Dr. Kirilcuk, a colorectal surgeon who has had two-years of experience. Because this will be my third surgery, she believed we must take every bit of precaution so that the third time would be successful. In reality, this condition is rare, and being that I had two failed surgeries prior to the appointment, makes things a bit more complicated. She did, however, explain to me the process of healing a fistula, along with the success rate. She also explained to me that she would have her colleague, who is more experienced in this procedure; help her in the operating room. Although the doctor is confident, being that I have had two past, failed surgeries, my chances for success are much lower. Dr Kirilcuk felt that in order to make this third surgery as successful as possible, making things more complicated due to the prior failed surgeries, an excess of precautions is the way to go.

Her suggestions were as followed:

1st: There will be a scheduled EUA (Exam Under Anesthesia). This is where I will be put under anesthesia so they may look more in depth to see if the scar tissue (prior surgery area) is ready to be worked on again. The tissue must be soft and be able to stretch for the next surgery. This exam will be the determining factor as to whether or not I get a surgery now or if I have to wait.

2nd: An ileostomy bag will be put in place. This will redirect my colon so that my area will have a chance to heal without fecal matter passing through it and putting pressure on the wound. That means I will carry around a bag connected to the colon, which will be on my lower abdomen. This ileostomy bag will be put in place for a minimum of three months in order for the area to successfully heal. Depending on when and if the area heals, the bag will then be removed.

3rd: A gracilis tissue will be removed from my inner thigh and placed over my problem area. A plastic surgeon would be needed for this procedure as he will remove this form of tissue from my inner thigh and place it in between the walls of my vagina and rectum to keep the holes from reopening and making the walls much stronger.

After this consultation, I knew there was another way.

I would have the worst time accepting the place of the ileostomy bag. I know it would affect me socially, as I would have to carry around a bag connected to my abdomen. The ileostomy is known to make noises when a person has gas and it may smell when a bowel movement is being executed. I am a college student and sitting in a small classroom with a room full of my peers is not something I would feel comfortable doing.

Also, I would have to take more time off from school. This means my expected year to graduate will be extended, which means I will have to take out extra loans to stay in school another year. I would have to plan to find employment now so that I can start saving for the rent that will be due but this economy does not make it promising. I would have to end up taking out more loans to help me with rent and bills.

The recovery time would take much longer then the priors. I would be healing from three different areas: the problem area, my inner thigh, and my lower abdomen. I would be placed in the hospital for at least 2 days. My problem area would take up to three months to fully and accurately heal. Since the ileostomy would be in place for a minimum of 3 months, I would have mandatory check-ups at Stanford University every two weeks. After 3 months or more, and after all signs show that I am healed in the problem area, the ileostomy would be diverted. This process is supposed to be the easiest, but I have doubts. How would my colon react after such a long period of no passage? I would also have a large scar on my inner thigh that may affect my lifestyle. I am young and I enjoy wearing shorts and skirts. If I am correct, this scar will be visible.

With all the thinking I had done, I finally decided to search further.

I found a gynecologist from UC San Francisco  (name forgotten) who travels to Africa to repair fistulas. I scheduled a consultation with her believing if she could repair fistulas in Africa then she could help me. Unfortunately, during the consultation, after learning of my failed surgeries, she told me she could not risk attempting to repair for the third time and said she did not have the experience to do so. I respected this. But, I could not believe it. I was heartbroken because I thought she was the answer to my prayers. I felt lost and alone, once again. I thought she, out of all people, would be empathic to my situation, but instead was very cold and flat out denied me.

For a few months, I continued my research, hoping that I would find a doctor who could help. Any doctor I found online, I tried to call and schedule a visit only to find out that they did not accept my medical insurance. In the process of doing my research, I was able to find a lot of information about my condition and I ultimately became familiar with what I had. A lot of the information was based on research that was either really really back dated or based in underdeveloped countries such as Africa. A lot of what I found that had to do with America was minimal and rare. What I found was that either fistulas “do not exist” in America or if they do the failure rate of repair is high.
WHERE MY LIFE STARTED AGAIN…

I decided to write a letter to the Dr’s Show (a reality TV talk show). I explained to them my condition and how I had a hard time dealing with the news given to me by a Stanford surgeon about a temporary colostomy and a gracilis graft procedure in order to correct my condition. I asked if they could help me in finding a surgeon who is overwhelmed with experience in the condition I have.

I received a call back from the show 2-weeks ago. They asked if I could come to the studio and share my story (L.A.). So I did. I flew into Los Angeles on Monday, April 9th and came back the following morning. The morning I flew in to LA, I was taken to Paramount Studios where I was interviewed by a producer, in which he filmed it. I was then taken to Dr. Lisa’s office in Santa Monica, where she practices as a gynecologist. Without cameras, she examined me and consulted with me about my condition. She was very personal and was interested in my issue. She began to explain that, in her opinion, the temp. colostomy is not the way to go and that less invasive procedures can be done. We then filmed a reenactment of the consultation in the patient room. At the end of the film, she surprised me with information about how they found a surgeon in my area, who has done hundreds of thousands of these surgeries and travels to Africa every year, and that is willing to meet me, talk about my options, and possibly do the surgery pro bono! She had explained her desire to do the surgery herself, but because the aftercare of this sort of surgery is crucial to the recovery process, being closer to home is my best option and will result in absolute recovery.
Just for clarification, the whole process was paid for by the Dr’s Show. The flight, transportation, hotel, and food was taken care of so that my experience could be as relaxed as possible. After a long day of shooting and running around with the producers, I had enough time to tour around Hollywood and buy a souvenir for Julian and I. They placed me at the Renaissance Hotel, which is connected to the mall located in the heart of Hollywood. I had the best experience and I am so glad I chose to reach out, despite how personal this issue is. This will forever change my life!
A day after I returned home, Chelsea, the producer’s assistant, whom I have had the pleasure to meet and closely get to know, promptly emailed me with an appointment date and time with Dr. Tom Margolis, the surgeon they found in Burlingame. I would be consulting with him on Friday, April 13th, at 3:30pm. Please click on the following link to view his website. http://www.bapelvicsurgery.com/index.html
I was the only patient for the day, as it was his surgery day. We spent over an hour in the patient exam room discussing the issue. I had 28 questions written out for him and he answered every one of them. He did not rush the appointment what so ever. He was very kind and I felt very comfortable.
Dr. Margolis expressed to me that he was more then willing and confident to do the surgery. He drew me a picture of exactly where and how he will be doing the procedure. He had been doing these surgeries for 20+ years. The procedure was different from the previous two that I had done. He told me he has done 500+ surgeries just like this one and all but just a few have failed, and those that failed were due to things such as age and smoking. He says we had a 95% chance that it will succeed this time.
He believed that I may have just had a few bad run-ins with the “wrong” doctors and was thankful I didn’t go through with the Stanford doctors recommendations until further second and third opinions.
Dr. Margolis travels to Uganda every year with Medlend, in which he is the director of the organization. He performs these same surgeries and he also teaches Ugandan doctors how to do them. They save the most complicated cases for Dr. Margolis. I expressed to Dr. Margolis that if he ended my fistula suffering, I would join him in his mission to Africa.

FINALLY!
I underwent my third and last procedure on Thursday, April 26th at Valley Care Hospital in Pleasanton. No ileostomy and no gracilis flap was needed. Just a simple transvaginal fistula repair. Dr. Margolis spoke with the CEO of the hospital and when he heard my story, he allowed Dr. Margolis to do the procedure at his hospital gratis.
The Dr’s Show was there too and they filmed it all!

 

 

 

 
HOW THIS HAS AFFECTED MY LIFE:

This affected me socially, educationally, and financially:

This issue had been affecting me socially for the past seven years, as I was afraid of being in small, quiet areas where the passing of air through my vagina can be easily heard. I could not begin any kind of intimate relationship. How would I be able to explain my condition to him and how would he feel about it? I always had to carry panti-liners, wipes, and tampons in my purse and hope that there is a bathroom wherever I go. I was often itchy after a soft bowel movement and I was unable to relieve my itch in public.

This process was a huge financial burden on me. I was a single mother and a student. I did not work. I received money from the remaining financial aid that I was awarded for the quarter and I was also receiving government assistance. With this aid, I was able to just get by with paying rent and bills. I did not have enough money for extra expenses, including medical expenses and transportation to out of town medical offices. I spent much more money on gas, as I had to drive an hour to get to Stanford University from where I lived. I lived alone with my child and my mother is employed full-time and lives two hours away from me. She is least likely to take time off of work, as she was afraid to lose her job. My son is in grade school and I took him and picked him up from school everyday. During my hospital stay and recovery time at home, I would need to find a live-in nanny to help provide for my child so that I can recover successfully. I could not afford to pay for a nanny so that was a huge challenge for me.

My main goal is to raise awareness to everyone, including gynecologists! I want the issue of a RVF recognized and try to prevent this from happening.

We need to look at what is causing RVF and prevent that from happening but also set clear a definite procedure in repairing a fistula, so women are not having 3 – 6 failed surgeries by 3 different, unexperienced surgeons.

I tried to contact the doctor who delivered my baby back in 2004. Come to find out, he died from a heart attack sometime in 2010. I did obtain a copy of my labor and delivery medical notes, which showed in fact that I did tear and an episiotomy was done.

Awareness is prevention!

Most of all, I want to let any women out there that has a RVF to not be scared, embarrassed, insecure and come forth because they matter and their health matters!

In the near future, I would like to speak out to at-risk youth girls who think about having a baby or to those who do have kids. I want to share my experience about not only the battles I had to go through as a young teen mom but also the risks that come with having a baby at such a young age. My condition has a lot to do with issues that arise due to teenage pregnancies. I would like to share my story to the world and put a voice on this gender-specific condition. How many women have this and keep silent because of how much stigma is placed on such an unnatural condition? Most importantly, I want to inform teen mothers that just because they had a baby, life isn’t over, in fact it has just began. I am raising my child and attending a University in California. I have dreams and goals that I am pursuing. I want to share my experience and advise young mothers that they can, too, follow their dreams.

 

34 thoughts on “My story about living with a recto-vaginal fistula

  1. Hi! So glad I found your blog! My issues with RVF started small several years ago but as of this year are beginning to not be ignored. I loved how informative your blog is. Thank you for detailing your whole experience!! I’m just starting the process of finding a doctor to do the repair and hopefully it will go as well as your final surgery did. As a single mother of 5 even one surgery is going to be very difficult. How was the recovery for your final surgery?

    1. Hi Crista,

      I am glad you found my blog. I hope it is helping you. The recovery for my final surgery was easier than the first two because this time the surgery was done trans vaginally, not rectally. Thus, elevating the pain from the anus.. I just did what the Doctor asked, I continued to take stool softeners and sits baths daily.. Did nothing for 2 weeks..
      Where are you from?

  2. Hi Sarah,

    My wife has a RVF and I would like to find out more on the transvaginal surgery approach. I heard most DRs cannot do this properly. We live in SoCal.

    1. Hi John,

      I would suggest you research Dr. Tom Margolis. He is a Urogynocologist. This is the link to his website http://www.bapelvicsurgery.com/dr-tom-margolis.html. He is very familiar with this procedure and has had many successes and very few failures. I have actually travelled with him to Africa. He is amazing and I would recommend anyone to him. If he feels that he cannot repair someone, he would be honest about it, but that rarely happens. He is very caring and has feelings. He is located in Burlingame, near San Francisco. I hope this will work out for your wife. Please do not hesitate to contact me with more questions.

      -Sarah

  3. What were the pretest you had to do before surgery. I am trying to estimate how much time I would be away from job.

  4. Hi,

    Your story is very informative. Could you please share what was the recovery like post your last surgery by Dr. margolis?

    Thanks
    Susan

  5. Hi Sarah,

    I was crying while reading your blog.

    I have a RVF and have had it for about 5 years. I also underwent surgery (it was performed by a surgeon that specializes in Colons, so I suppose I was referred to a similar doctor as you were in the beginning.

    I have been living off Loperamide, as I try to avoid having any loose stools. I also do not eat any spicy food, as I know this upsets my stomach. I have learned what foods I can eat and what I cannot all by myself. My doctor also wanted me to have the “bag” and it was something I refused to do.

    Mine happened (this is going to sound ridiculous) and the doctors were amazed…by having sex. Now we weren’t trying any strange positions or anything. My boyfriend of the time was really not a nice person and I had to cope with my condition by myself.

    I am now engaged to someone else, and he is so supportive about this. He knows when I say “no” what I mean by it.

    I would like to get mine repaired, but having to take off from work etc is a big hassle.

    Also, I don’t have medical aid, so I have to get it done at a State Hospital and where I live these aren’t the greatest.

    It is also so embarrassing to have to explain to someone how it happened.

    I will never forget the night before my surgery they gave me stuff to drink to empty my stomach and I got stool all over me. How can they give you laxatives if you have NO control of your stools?

    It really is such a horrible condition.

    Thank you for your blog.

    LS

  6. Hi Sarah,
    I am 25 years old experiencing a recto vaginal fistula. I have had my first surgery and exactly one week later I started having the exact same symptoms. I am so inspired by your story. You have given me hope that I can get my life back. The major set back for me is I live in Georgia and I have an insurance that not a lot of people accept. (Which is also similar to your story) But I am going to try my best to get in touch with Dr. Margolis and see if he would be willing to take on my case. Do you know of any charity groups in the United States that help with women suffering from fistulas? All of the charity groups I have found are for other countries because fistulas don’t happen here often. I would appreciate any help you could provide me with. Thanks you so much for sharing your story!

    -Jena

    1. Hi Jena,
      I am 36 years old and I am also suffering from a rectovaginal fistula. I had my first (unsuccessful) surgery February 19, 2016. I noticed the same symptoms approximately one week after my surgery. At first, I thought I was imaging it but soon realized that it was much worse than it was prior to my surgery. I am currently scheduled for my next surgery, April 27, 2016. If I go through with the surgery I will have a seton placed through my fistula to allow the tissue to become healthy and also have an ileostomy (hopefully temporary). Followed by another surgery to remove the seton and plug the fistula. (I do not want a colostomy!) I too live in Georgia and I’m having trouble finding other resources/options. Any information you can provide me with is greatly appreciated. Thank you.

  7. Thank you so much for your story! This has by far been the most helpful resource I have found online. I am so grateful that you posted this. I live in Michigan so it is unlikely that I can go to Dr. Margolis but using his website and your blog as a resource to find local physicians has been very helpful.

  8. Thank you for telling your story. It gives me hope and makes me feel like I’m not alone. I have been trying to find people who are going through these troubles now. It seems most of the message boards and blogs are all from 2012 or earlier. If there are any other women out there that just need someone else to talk to, I’m feeling the same…

    1. There is a Facebook page called living with obstetric fistula. There are tons of women in this group who are willing to talk and help you get through this rough time. -Sarah

      1. Thanks for the reply 🙂

        I tried going to the facebook page and am getting an error message (The page you requested cannot be displayed right now. It may be temporarily unavailable, the link you clicked on may be broken or expired, or you may not have permission to view this page) Are you part of this group on fb? Or do you know someone in the group who could help me?

  9. Hi Sarah, I too am suffering from a rectalvaginal fistula, however, like most others, I did have not given birth. Am looking for some people to connect with, and it looks like the Facebook group isn’t around anymore, or I have having trouble finding it. I’ve seen every colorectal surgeon and GYN in the Buffalo, NY area, and have been sent to a cancer center for treatment, and then passed along to the Cleveland Clinic who told me that they could cut this thing out, do major reconstructive surgery to me, but the likelihood of it coming back with a greater veracity would be about 90% so we haven’t sought any more treatment. I’m so at a loss on how to cope, and my health drives me crazy. Its not an issue that’s easy to share with people, and I just feel so hopelessly alone in my struggle. Please, help me find some people who can relate! I’d appreciate it more than you’d know. Thank you for being so brave and telling the world who you are

  10. I had a RVF almost two inches in length caused by a Mirena IUD. I’ve read a lot of these boards and found so many have unsuccessful surgeries. I went to the University of Washington Medical Center and thank God I am almost eight months post op and everything is great. The care I received there was nithunfnothing short of amazing, I’m actually crying as I type this. Thank you for sharing your story, it isn’t easy.

    1. Wow well that’s nice to know that you are healed. Congrats. Are you part of the facebook group? “living with an obstetric fistula”. It is a good place for us women to come together and share our stories. And you can be a good resource to others living in your area. Thank you for sharing.

    2. Hi Alexi, can you let me know about your experience at UW medical Center? I suspect I have an RVF and am looking to get diagnosed and treated there. Please pleas email me if you can as I am getting depressed.

  11. I am 36 years old and I am also suffering from a rectovaginal fistula. I had my first child at age 18 (senior year of high school). There was a complication during birth, when my unborn daughter had a BM in utero. Therefore, I had to push her head out and wait for the respiratory team to suction her before I could continue pushing (she was 7lb 3oz).There was not any noticable damage at that time. 5 1/2 years later I had my second daughter (full term/induced labor), she was much larger than my first and I did tear and have a small episiotomy (she was 8lb 8oz).

    I had my first (unsuccessful) RVF surgery February 19, 2016. I noticed the reoccuring symptoms approximately one week after my surgery. At first, I thought I was imaging it but soon realized that it was much worse than it was prior.

    I am currently scheduled for my next surgery, April 27, 2016. If I go through with the surgery I will have a seton placed through my fistula to allow the tissue to become healthy and also have an ileostomy (hopefully temporary). Followed by another surgery to remove the seton and plug the fistula. (I do not want a colostomy!) I live in Georgia and I’m having trouble finding resources & options. Any information you can provide me with is greatly appreciated. Thank you.

  12. Hi Sarah, I was wondering if you are still fistula free today?

    My rectovaginal fistula just started up almost 3 weeks ago. I’m already house bound and not living my joy filled life any more. I have a business that has me working with the youth in our community and I unfortunately am going to have to close my business if I cannot get repaired.

    When my OB figured out what it was she was so positive that I would have surgery and it would be fixed. Then I got on the FB groups and read how hopeless it is. I’m petrified.

    I’m going to a specialist on Monday and am starting the process to see Dr. Margolis.

    My fistula wasn’t found in a CT scan with contrast and they have no idea what caused it!

    I’d really like to know how you are today and thank you for your blog.

      1. Hi Sarah, my case ended up being a weird one. I actually had a fistula from my colon to a fallopian tube. I had a 6 hour surgery exactly one year ago today. I’m fistula free thank God. I’m so happy to hear you are too!

  13. Hi Sarah. I had my baby in 2016 and got a RVF. I’ve had 2 failed surgeries. I’m looking for someone to talk to that can relate. Please email me if possible, or send your email. I really appreciate it. Thank you.

  14. Hi Sarah, please can I email you as well? I think I suffered a RVF post childbirth but my OB was not able to locate a fistula but will refer me to a colorectal surgeon. I’m super depressed and this was not what I had expected of childbirth and am so fearful of a colostomy.

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