Rectal Vaginal Fistula

Hope you are doing well.



Can you share your doctor's name ?



Regards

Hi, I just found this site after dealing with 2 and 1/2 years of fistula problems. Where was this then?? My story is long, but it's really informative and I hope it helps someone who is going through some of the stuff I did, or who doesn't want to! Please feel free to send me any questions! :-)

I had my daughter in November of 2004 and although I couldn't push her out and they should have done a c-section, my midwife didn't want to ruin her record, so she called the dr. in to yank her out with the vaccuum, which didn't budge her, so he pulled her in one push with the forceps. I know he cut me a little, not sure how much, but when he pulled her out, my husband says I exploded.

He sewed me up that night, but I'm thinking it was only externally...all through the night until 2 pm the next day, I lost almost all the blood in my body. Finally, after checking me about 4 times, they realized there really WAS a problem, and took me back to the OR for a repair again.

about 2 weeks postpartum, while sitting down, I could feel gas pass through my vagina. I KNEW that's what was happening, but didn't know what to do, other than go to see my midwife. HUGE MISTAKE!! She checked me, had another OB check me and sent me on my way. I went back at 3 weeks with the same issue. She checked again...never once mentioning to me what was possibly wrong.

No-one ever found anything, so I went about my life with the new baby...not being able to sit comfortable for a year. When I went in for my annual, that's when a different dr. finally diagnosed me with my recto-vaginal fistula...but by then it was infected and absessing.

She referred me to a specialist who referred me to a colorectal dr. The first 2 surgeries were just cutting and draining the fistula, with some setons in place for drainage. The third surgery actually fixed the fistula, he did a flap from my colon over the hole from the rectal side. But after that surgery and all the other ones, including after birth, my sphincter muscle was completely unconnected, so I had little to no control! I could barely leave the house.

So in May of 2006 I went in for the worse surgery of my life! I swear, if I knew it was going to be this bad, I would have rather sh*t myself for the rest of my life. Anyway, they did a sphincter overlap repair and I was down for a few weeks...and for a few months...and a few months later I still wasn't better, and I just kept taking pain killers, and they just kept giving them to me. I can't even describe the pain I was in especially going to the bathroom, but burning and shaking, and having my 2 year old either with me, or being neglected b/c I just had to get into the bathtub.

Finally 8 months later, when it was still not healed (which normal healing time is 8 weeks), my dr. called his partner in to take a look, and that's when they found ANOTHER fistula had developed. Not hole to hole, but rectum to outer perrineal. SO, I went in December 2006 and had a plug put in, thinking that was the FINAL surgery...New Years Eve, the plug came out! What a great new year that was. I was informed that "yes, that is possible" and that I would have to come back in for another procedure. So within 10 days, I was back in for another seton procedure. Have you lost count yet? This is number 6! Now I have the FINAL procedure scheduled for May 4, 2007...now that the seton has closed up the hole a bit, they are going to try the plug again. I'm not really getting my hopes up about this one, but this one really should be the last one. (although I hear that all the time and then am devestated when it's not!)

Now that I know what was going on and how negligent my midwife was, I requested copies of my file, and it turns out she wrote in the file at my 2-3 week PP visit "POSSIBLE FISTULA" Why didn't she tell me that? Or tell me what to watch for? Or anything, I had never even heard that word before, and I could have done my own research...but she didn't want to persue it b/c it was partly her fault!

So YES, I wish there was a way we could get the word out, or get our stories out there to people who are going through this and don't know about it's possibilities. I was one of them, and MAN I wish I knew what was going on. It just makes you feel so disgusting and undesireable, and there's no-one to talk to about it. I'm so glad I found this forum where people can talk to me about their problems too!

I'm so glad I'm not the only one who feels like this! It's a really terrible feeling and I don't blame HER for it, but I just wonder, where would I be and how would I feel if I didn't have her...but then I think about how wonderful she is and I think it's all worth it (sometimes). :)

I've definately tried. I got a copy of my file and found out that she had written "possible fistula" in the file at 2-3 weeks postpartum and I had told her my symptoms...so that's obviously what it was. She didn't do anything about it, no tests or anything, she felt for a hole and had a few others feel for it and sent me on my way!



I tried to sue for negligence but the few lawyers that I spoke to said they weren't interested b/c it's so hard to prove fault in a case like this.



What I really need to do is get my file from the delivering hospital and see what happened the night I delivered, b/c apparently something went wrong and they had to re-repair it the following day.



These bills are killing us. I'm going in for my 7th surgery on May 4th!

I was told I would have the colostomy for up to 6 months. It ended up being longer because of the way my body healed. I had is March 2, 06 and reversed Dec 14th, 06, so about 10 months. I thought the RVF alone was horrible to deal with, let alone having a colostomy. I truly feel the colostomy was what helped things heal, though. As much as I did not want to have sh*t coming through my abdomen, I know that it was the best decision. After the colorectal surgeon examined me 2 weeks after my baby was born he felt it was the only reasonable option for me. I had an infection and the fistula was as big as his fingertip. The burning and pain associated with the stool passing through my vagina was unbearable. I felt like I lived in the bath and shower. We bought a detachable shower head just so I could keep myself clean. I wore Always pads all the time so I would not soil my underwear.

I do remember the first time I was released from the hospital after my colostomy surgery, baby just 4 weeks old. I had to stay with my parents for a while since they were closer to the hospital and I needed the help with the baby. My husband took so much time off with FMLA.

My advice: if you have a colostomy, please use the opaque bags. I was so disgusted and felt so much worse when I had to use the clear bags at first. No one wants to actually see their own sh*t hanging off their abdomen. The opaque bags made a big difference for me. Also, closed end pouches. I couldn't even try to clean out the bags and reuse them. I would rather spend the extra money for throw away bags. I had an excellent surgeon and was in the best care thankfully.

My doctor was from the Cleveland Clinic in Cleveland, Ohio. I had my son in Michigan, but my parents only live 45 minutes from Cleveland fortunately. His name was Dr. Ian Lavery and he is one of the best colorectal surgeons in the world. This facility is amazing and I have never had better care. I would highly recommend having anyone go there, especially for this type of problem. You can look through the website for more information. It is definitely world class care. No one wants to have to go through multiple procedures (unless necessary). My scars are minimal as well.
clevelandclinic.org



quote="gogi-rao"]macrmf wrote:

For those of you who had failed repairs, how long did the doctors wait to try to repair? I was told I would have to wait at least 3 months before an attempt at repair. In the meantime, I had the colostomy to help the process along. How long did you wait between each subsequent repair attempt??? I think it's very important to seek out a very experienced colorectal surgeon. I was fortunate to go see on of the best in the world. THe whole process was almost a full year, but it's worth the wait in the end. The body needs time to repair so don't rush, because it could take a lot longer in the end.

Hope you are doing well.

Can you share your doctor's name ?

Regards

Thanks macrmf for info regarding colostomy. My surgeon says I will need to have it for 3 months, which seems like a lifetime!!! My fistula is tiny, so I hope it heals quickly. I've already had four failed repairs in the past year and if this is what it takes to be rid of the damn fistula, then it is well worth it.

I'm pretty sure this is what they did for me. I had an advancement flap from my colon, basically, he cut a flap from a layer of my colon and pulled it down over the hole and sewed up back over...I'm pretty sure it didn't hold, but I ended up needing a sphincter repair after it anyway, so that guaranteed the RVF be gone...now I'm just dealing with a perianal fistula...which developed after the sphincter repair.

I totally understand how you feel about 3 months feeling like a lifetime. If I knew ahead that I would actually have it for 10 months I don't think I would have been able to deal with it the same. I would have said 'no way, forget it'. It's funny how things pan out. If we knew we would have had the RVF from birth we probably wouldn't have ever opted for vaginal delivery. We never know what's around the corner!!!!!!!!!



I know you'll be fine and it will help your body get back to normal. There is an end in sight!!

macrmf wrote:

My doctor was from the Cleveland Clinic in Cleveland, Ohio. I had my son in Michigan, but my parents only live 45 minutes from Cleveland fortunately. His name was Dr. Ian Lavery and he is one of the best colorectal surgeons in the world. This facility is amazing and I have never had better care. I would highly recommend having anyone go there, especially for this type of problem. You can look through the website for more information. It is definitely world class care. No one wants to have to go through multiple procedures (unless necessary). My scars are minimal as well.
clevelandclinic.org



quote="gogi-rao"]macrmf wrote:

For those of you who had failed repairs, how long did the doctors wait to try to repair? I was told I would have to wait at least 3 months before an attempt at repair. In the meantime, I had the colostomy to help the process along. How long did you wait between each subsequent repair attempt??? I think it's very important to seek out a very experienced colorectal surgeon. I was fortunate to go see on of the best in the world. THe whole process was almost a full year, but it's worth the wait in the end. The body needs time to repair so don't rush, because it could take a lot longer in the end.

Hope you are doing well.

Can you share your doctor's name ?

Regards

Thanks for the info !! Sure it will be helpful for lot of people who don't mind travelling to get this annoying problem fixed. If I knew before then I might have travelled. I was lucky enough to get a good surgeon as well.

It is my Fistual Discovery Anniversary Date. I waited ~4 months before the surgery.

Everything seems fine but some times..I get very emotional.

I read in the post somewhere about the gas coming out normally but being sucked into the vagina from outside and coming out of vagina again.

Is that a possibility ?

I have encountered such incidents very occasionally and was wondering.
My thinking is if fistula is there then all the time.. the gas should come from vagina.

Any thoughts ?

I am still going through physical therapy and not active.


I was always for c-section and should have stuck to it :-(

When I had my RVF, my gas didn't always come through my vagina...it just depended on how I was sitting. I had a pretty small connection though so I'm sure that makes a difference too.

I have a question for those who have had their fistulas repaired...how many times did it take to make the problem go away?...and did it ever go away for good? Do you feel back to normal down there?

I'm a bit concerned about the nerve and muscle damage. It's been so long this way that I just think it will always feel like this, even though the actual hole is gone. I just want to be able to sit down, or wipe my bottom without having to worry about how, without the pain.

As I stated before, my fistula was as large as a fingertip and extremely symptomatic. I had the colostomy right away and when my doctor evaluated me after 3 months, it had closed on it's own and was only the size of a pinhead. I still had to have an overlapping sphincteroplasty operation 5 months after giving birth, so I know they evaluated the pinhole fistula during that surgery. He also repaired my perineum since it was so thinnned out from the failed repair (by my OB/GYN) after giving birth. I was also evaluated before the sphincteroplasty surgery for the strength of my inner and outer sphincter muscles as well as the nerves. My inner and outer sphincter muscles were only functioning at 50% capacity and that's why I had the surgery. They found no nerve damage at all, fortunately.



Currently, I feel like I used to feel before all this happened. I am able to use the restroom without any pain or problems. I have no trouble with intercourse either. My perineum is occasionally sensitive, but this could also be from the scar tissue where the episiotomy was started (as stated by my 'NEW' OB/GYN). I am so thankful to not have the pain and suffering that I felt for almost a year. It was pure torture and so intense. I truly felt like I would never ever feel normal again. I know it sounds like I had a smooth time with things, but I was emotionally and physically a mess. My doctor told me that when I first came to see him that it looked like a warzone down there. I thought that it would never possibly be able to be normal again. I had 2 infections as well after the sphincteroplasty operation and that was incredibley painful and horrifying. I can't tell you how hard it was to have to wait and be patient. I know you all know how that feels. Every time I went to the doctor it was "i'll see you in 6 more weeks". 6 weeks felt like a lifetime. And trying to care for the baby!!!!!!!! It was so difficult with the pain and the work that goes into having a colostomy.



This is a message of hope, because now I do feel better and the nightmare has come to an end. I know that you will get through this and you will feel better and you'll be able to use the restroom without pain. It's not an overnight situation, that's for sure.











(by

Thanks macrmf!

I completely understand where you're coming from with the waiting game, and weeks and months of just "see you next time" and "this will get better" although I'm still waiting.

My sphincteroplasty was the worst experience I have ever gone through in my life, and as I've stated before, if I knew it was going to be that horribly painful for so long (8-9 months - which btw is not normal) I would not have had it done.

It's been very emotionally and physically depressing, and I'm glad you've come through it and feel normal again. It gives me hope.

After a RVF repair, a sphincteroplasty and another upcoming fistula repair I am really REALLY looking forward to feeling better.

That I think was the hardest part...and still is at times, feeling so incredibly horrible, and not wanting to do anything but sit in the bath or on the couch, but still have a baby to take care of. I feel like I've missed out on alot of her life already, not able to play on the floor with her, and neglecting her so I could get better...

All the best !!

Stay strong. Things will be alright.

I don't have any pain when I am doing my routine things but it hurts when I have my physical therapy. My case was not as complicated as you guys. My spinchter was intact. All I had was a fistula repair.



Can someone please tell me how did your doctor evaluate your fistula ?

What kind of test/procedures were done to determine the course of action ?



I just have that one symptom about which I asked.

If a tiny hole is present .. I have decided to let it go.



ShellySue... why are you going through a second fistula repair ?