Daily Archives: May 2, 2012

I have been living with a recto-vaginal fistula for the past 7-years

I am a 26-year-old single mother of a healthy and handsome nine-year-old boy. I graduated from The University of California, Santa Cruz in June of 2013. I had been living with what is known as a Recto-vaginal fistula (Obstetric fistula) for seven years. I had 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, is unhealthy and unsanitary and can cause numerous infections. It also makes 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 had 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 passes through is extremely loud and unpredictable and the fecal matter comes in a liquid form with occasional small bits, usually after a soft stool.  I have to clean myself more thoroughly then an average woman would. I use wet wipes after every stool and clean inside my vagina area with my pointer finger to make sure all the fecal matter has been removed. It takes me five minutes to wipe myself clean, but when my stool is soft, cleaning inside my vagina is not sufficient enough. After soft bowel movements, I tend to leak leftover stool from my vagina for the rest of the day. Because of this, I must wear a panti-liner at all times throughout the day.  I have to use the bathroom often throughout the day so that I can continue to remove and clean the remainder of the fecal matter that continues 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 now pass air and fecal matter more 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 are 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.

MY THOUGHTS ON THIS????? After thinking hard about the suggestions, I decided to seek further into this condition and lay out all my options on the table. HELL NO!

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.

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 is 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 has been doing these surgeries for 20+ years. The procedure is 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 have a 95% chance that it will succeed this time.
He believes 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 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 has affected me socially, educationally, and financially:

This issue has been affecting me socially for the past seven years, as I am afraid of being in small, quiet areas where the passing of air through my vagina can be easily heard. I can’t 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 have to carry panti-liners, wipes, and tampons in my purse and hope that there is a bathroom wherever I go. I am often itchy after a soft bowel movement and I am unable to relieve my itch in public.

This process has been a huge financial burden on me. I am a single mother and I am a student. I do not work. I receive money from the remaining financial aid that I am awarded for the quarter and I also receive government cash aid. With this aid, I am able to just get by with paying rent and bills. I don’t have enough money for extra expenses, including medical expenses and transportation to out of town medical offices. I spend much more money on gas, as I have to drive an hour to get to Stanford University from where I live.  I live 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 is afraid to lose her job. My son is in grade school and I take him and pick him up from school everyday. During my hospital stay and recovery time at home, I will need to find a live-in nanny to help provide for my child so that I can recover successfully. I cannot afford to pay for a nanny so this will be 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.

 

UPDATE:

01/26/14

It has been 1 year and 8 months since my third and final surgery.

I am so very proud to say that I have been fistula free since then. I have had NO SYMPTOMS OF A FISTULA!!

I am amazed at how much my life has changed since meeting my hero (Dr. Margolis).
I was given my life back and it was all due to my persistence and tenacity. I am so thankful.

Links that I have found useful

  • http://www.medlend.com/ : This is an organization, in which Dr. Tom Margolis is the director (surgeon who did my third and final surgery), that travel to many third world countries to preform RVF and VVF repairs. They do about 50 repairs within 10 days! On this site you will find videos, pictures, and much more!

I plan to apply to this organization as a staff member and travel with them to Uganda this September!

  • https://www.facebook.com/groups/109334165772642/ : If you or somebody you know have a RVF, this is a Facebook support group! All the women in this group have a fistula due to labor. It is a comforting place to share your story. These women have saved my life. I finally know I am not alone!

Internet sources : define RVF

” The World Health Organization has called fistula “the single most dramatic aftermath of neglected childbirth”, estimating that more than 2 million women live with fistula worldwide. But, it fears even this number may be a gross underestimate. Short of death, the most devastating effect of neglected childbirth is obstetric fistula, a hole that forms between the vagina and the bladder or rectum during prolonged, obstructed labor”  – http://www.walktobeautiful.com/

“Obstetric fistula is a severe medical condition in which a hole (fistula) develops between either the rectum and vagina or between the bladder and vagina during childbirth. The fistula usually develops during prolonged or obstructed labor when the baby’s head is pressed into the mother’s pelvis. If not treated in time, the pressure stops the flow of blood into the pelvic organs and can kill the tissue and leave a small hole in her body. Without surgical intervention, urine, feces or both may flow through the gap, causing a lifetime of incontinence, infection and shame.” – http://worldwidefistulafund.org/about-fistula/