Recto-Vaginal Fistulas - Part 5

Thanks for the information, Bea.  This all gets overwhelming at times.  I went back to the doctor and I did get some good news.  The fistula is very low in my rectum and is not going through any muscle.  The perineal muscle he repaired in April is still intact and so is my anal sphincter.  As far as he can "feel" the fistula is not going through to my vagina.  I am scheduled for a fistulagram this Monday I'm guessing to confirm what he is seeing???  I am also told that the surgery will be outpatient and the worst part will be the bowel prep before it....I have to be on a clear diet for 48 hours prior to surgery and take golightly however, my doctor tells me I will not "golightly" but I will be "going a lot"! lol

Hi kc77

A fistulagram is not a term I've heard before - could be a UK/USA difference. However it sounds like the thing I described where a barium 'meal' is injected in the back passage. In effect the barium meal is a 'dye' in that it shows up on x-ray. It doesn't matter what they use as long as it shows up on x-ray. I can't promise what they will do but from my experience of one x-ray based test, they use a syringe to put the dye in your back passage. They then x-ray you. They may also ask you to then go to the loo and expel the dye. This is a good idea because the muscles pushing the dye out will also force the dye down the fistula. A further set of x-rays will then show the path of the fistula.  SO that is my best guess. As a test it is no more than undignified. You worry about holding the dye in of course, but that is natural.

Let me know how you find it.  Basically sounds like good news for you. If the hole is not in the vagina then it must be coming out of a hole in the perineum? If it is then I think that is strictly an anal fistula (which what I have now). But really good news about your anal spincter muscles.

Good luck - keep me posted!

Bea

Hello all,
I gave birth to an 8lb baby girl at the end of October 2010. A couple of days later I noticed air passing through the wrong way. I was so embarrassed and sure I was losing my mind so I didn't mention it to anyone right away. A few days after that I broke down and told my husband I was really afraid that something was wrong and told him that I was passing gas and was thinking I was also passing stool. It was hard to tell with all the lochia what exactly was happening. He said I needed to see the doctor right away so I went the next morning. The doctor confirmed it was a recto-vaginal fistula.
I had a very short labor since I was induced. The doctor joked that we'd have our baby by lunch time and we did. I had previously told the doctor I didn't want to be cut, I would rather tear. But he cut me anyways. The episiotomy (spelling?) turned into a 4th degree tear. After he found it he said we had to wait a while to let everything heal and let the swelling go down. I saw a general surgeon who also told me I had to wait. So in January the obgyn said the swelling was down and the tissue looked healthy enough to do a repair. My daughter was 3 months old on the day I had my surgery. They did it and sent me home. They said I could breastfeed after 24 hours of pumping and dumping but I tried and she got sick so I had to wait another 24 hours and try again. 5 days after the surgery I noticed the symptoms were back, and worse. It was very depressing.
I got a referral to a colo-rectal surgeon in March. She said I would have to wait until June to do anything. The hardest part of waiting is that I may lose my health insurance and how will I get other insurance with a "pre-existing condition"?
I moved in April from Tennessee to Washington state, a 2,200 mile drive with a nearly 6 month baby (who got sick right before the trip). My Dad flew down to drive the U-haul back up with us. The hardest part of the move was having to care for my girl parts in gas station bathrooms with ice water! When I had my first surgery my mom came to stay with us. She helped as much as she could but she's had 2 head-injuries so she gets seisures, can't handle loud noise or bright lights, and tires out quickly.  Since my husband has been deployed for the past 18 months I've been doing all this alone. He got to come home for 2 weeks when she was born and for another two weeks in March. He will be home next month sometime between the 15-30th.
I saw a new colo-rectal surgeon last thursday. I really liked the one I saw in TN because she was a woman and really seemed sympathetic and knowledgeable. This new one is knowledgeable and sort of sympathetic...but one thing worries me. He says I don't need to modify my life after the surgery...that I'll be able to lift my 17lb daughter the next day. I will stay in the hospital that one night which will be better than driving home while I'm still sick from the anesthesia like I did last time. He is doing tests this coming thursday, 3 different ones. But he belives I need a sphincterplasty and a transperenial reconstruction using healthy tissue from my labia. He says he does 12 of these every year and has a 90-95% success rate.
Since my surgeon thinks I'll recover quickly this makes me doubt him a bit...What were your recovery orders? Low residue diet? high fiber diet? no lifting?  I have already told my family I plan on staying in bed for the first 2 weeks and taking it easy after that. But I'm thinking maybe I should try to have only a liquid diet for 4 days? I do want to continue breastfeeding though so I don't know if I can go that long without a healthy diet.

I'm so sorry that we're all in the same boat but its really nice to not be alone in it! Thanks in advance for any advice. Got to get baby girl down for a nap now. Sorry if this is fragmented, I've got a sleep deprived mommy brain and fibro fog.

Hi everybody!

I am a previous poster. Just some background information for the newbies. I had a baby almost a year ago that resulted in a stage 4 tear. I went and saw a CRS in March and she said she would perform the advancement flap surgery. Currently I am living with the situation, I want to wait to get it fixed until I am done having children. Although I plan to have csections, I was worried additional pressure could cause strain on the area. My symptoms are mainly gas, sometimes controllable, sometimes I get up and it's like a machine gun I can't control, luckily never super loud! Occassionaly I will stool with really loose BMs. I notice it a lot more when I have my period. I get blood on tissue  paper when I wipe back door. Maybe that means it is bigger on the vaginal side?

 

I am debating whether to even get the surgery at all since I seem to be living with it fine, with only occassional mishaps. My main question is I can deal with it when I am 25 years old, but what about when I am older. Do you think age has any issue?

 

Hope all is well!

Katie

Firsttimemommy-  I am dealing with kind of the same concerns with my current doctor.  He is a gynocologist, not experienced in these repairs, and seems to be reading and learning as he goes along with my care.  I formed an abscess after a perineal repair last April that had to be drained and as a result I formed a rectoperineal fistula.  I was told in April that I just had to wait 6 weeks and he would refer me to a general surgeon that could do the repair in June.  Then I was told that he (my gyno) could do the repair himself since the fistula was low in the rectum and a simple fix.  I went for my testing (a fistulagram and a CT of my pelvis) and now he tells me I have to wait another 6 weeks.  I was also told that in the mean time, I can resume sex, going to the gym (with no weight restriction), and swimming.  I have to say, swimming sounds just a little unsanitary to me!  I feel like at the last visit I had he was not understanding as to how uncomfortable this is for me.  He said that it shouldn't be that difficult to deal with since the only time stool is present in the rectum is right before a BM.  Well, then I don't know what my problem is because I am leaking from my anus and my perineum for hours after a BM! lol  I also told him I think there is air passing from my vagina but he doesn't seem to think this is an issue worth checking into.  I have to admit, I'm not positive it is gas passing through my vagina because I have the abnormal opening in between the anus and vaginal opening.

hi..   it s now 2 months i have had my fistula surdery.. though the extent  of stool discharge through vagina is reduced but not completely stopped..it still leaks also accompanied by passin of gas..feel very depressed sometimes whenever i see the discharge...the coming mondayhv an appointment with the Doctor..hoping that everything goes well..I don wnt  to have further surgeries... 

Hi Everyone,

 

I just need a moan really. Had an RVF for god knows how long now, had an advancement flap in dec which failed. Been referred to another hospital who i finally see next week. But i feel so down, again. Took my kids out today and had to come home early cos i was leaking and was getting so sore with it. Wondering if i have IBS too, gonna speak to my doc about it next week.

Hardest thing is having no one to talk too about it, friends dont really understand or dont know what to say (which i totally understand that), hubby just says dont worry be sorted soon. Just wanna be able to go out n not worry about where a toilet is, not worry about getting intimate. So fed up with it all  :-( 

Good luck to everyone on here with future operations tho, dont let my mood bring u down xx

Nicz30

Thank you for ur reply, i did feel abit better after reading it. Worst thing happened today, my surgeon who has just referred me to a new hospital came into my work place today with his family (I work in a shop) and i burst into tears. Felt so stupid but obviously needed a cry. Sadly he didnt see me, would have liked to ask him more questions, wasnt the place for that tho lol x

Hi everyone,
I am new here and can't believe how many people have this problem. I thought I was one of the only ones.
I had my baby girl in January so she is 5 months old now and have had symptoms since then. I kept trying to tell my midwife I was passing wind through my vagina and she kept reasssuring me that this was impossible and not to worry. I also mentioned it at every appointment and kept being told it was highly unlikely I have a fistula because I "only" had a 3a tear. I have kept persisting though as I have also had stool passing through as well and so finally they are taking me seriously. They are going to refer me to another hospital for tests (ultrasound and stress test) and then take it from there. I am really nervous about it and still just can't believe this is happening to me! The consultant is supposed to ring me tonight to tell me where I am going to have to go but she rang yesterday to say they were having trouble locating my notes. I am glad I found this forum as I can't really talk about this with anyone. None of my friends and only a couple of my family members know about my problem and even they don't really like to talk about it. x

Char60, I just wanted to let you know that you do NOT need to take your midwife's word for it. In January of this year (2011) I gave birth to my son (7 lbs, 5 oz), not an extremely large baby. I specifically asked for a doctor to deliver him but for some reason all the doctors were busy when he was about to come out so a midwife rushed in to deliver him. She seemed lost, not knowledgable at all, and was not helping me at all. She ended up cutting me twice but i still tore the rest of the way which resulted in a 4th degree tear. She informed me of this and started to stitch me up. It took her about 30 minutes to complete her stitching, all the while never asking a doctor for a second opinion to see if she was doing everything up to par. About 5 minutes later I felt air come out my vagina. I informed the nurses of this and they adamently stated it was just air from the uterus. I wasn't so sure. This continued into going home and I began to wonder. So, I googled the symptoms and knew I had a rectovaginal fistula. I went back to the doctor about 2 weeks after giving birth and the doctor I saw was adament that I was crazy. I pushed and pushed until I finally saw a doctor that believed me and found the fistula. He made me wait 5 months before he would fix it because he said the inflammation needed to completely go away and the tissue completely heal. I am currently on my 3rd week post-surgical repair. He took the tract completely out and stitched the tissue up layer by layer, so he basically reconstrcucted my vaginal tissue. He also repaired by anal spincter because in his words, "it was an absolute mess." My only problem is that I dont believe the midwife was qualified to stitch me up and also wasn't experienced enough to notice I was also torn inside and she needed to repair my spincter and tissue beyond my perineum before I left the hospital. She basically just stitched me up to be best of her abilities, which sucked. I currently still feel a tiny bit of air come through, but before I was passing gas and stool. It was a large fistula, located low, which I am certain could have been prevented if someone more qualified had been notified. I will see a specialist if this surgery does not work. My post-op instructions were to take stool softeners for 3-6 months following the surgery, no sex for at least 6 weeks, no baths for 6 weeks, no lifting anything above 10 lbs (I did get my docs permission to pick my 16 lb son up as long as I use my big leg muscles and don't stoop over to pick him up), no exercise or activity for 6 weeks. I am currently seeking the help of a lawyer because I think this could have been prevented had more care been taken. I haven't been able to work now for almost 7 months because I was incontinent. I had to rush to the bathroom even for a regular bowel movement, and if i had diharrea there was not holding it in (it would come out my vagina), I couldn't hold gas in at either entrance, and mentally and emotionally I was not very strong. I did learn to live with it, but going anywhere was a hassle because I had to bring extra clothes in case of an emergency. My husband was the best, he supported me and let me know everything would be ok. We have only had sex 2 times in the past 6 months, because it was painful and I felt so disgusting. For any of you going through this, you are NOT alone!!! We will get through this and I have to remind myself almost daily that there is much more worse things people are facing, even though this seems horrible and it is life-altering, I will not give up!

I'm looking for some advice.

Im in the UK & have been referred to different hospital because its better than my local hospital & its nhs treatment that im getting. Im waiting for an appointment to have some tests done, an anorectal manometry & an ultrasound i think, i was told i would have these tests within a couple of months i have now been told its more like 4 months before i will even get an appointment. I received a letter last week for an appointment to see my consultant, which is meant to be after my tests, but this appointment is for Feb 2012. And that it for him to tell me which operation i will be having, i will then have to wait god knows how long for my operation date.

My question is: are they leaving me too long with this condition? Ive lived with it for years, had an advancement flap in dec & since then its alot worse. I dont like to go out incase i have any "accidents" & im having quite a few "accidents" now. Can't hold anything in, and obviously cos i worry about that when i go out it makes me more anxious. I feel like i have been messed about quite alot by the hospitals ive been too & im not sure whether i should just go guns blazing & force everything to be brought forward, or just wait & accept that waiting times. I do phone quite abit asking how much longer, so they probably do get fed up with me, doesnt make anything move any quicker tho! So im not really sure who i go to, to get it all moved along quicker.

I there, i too had a rectro vaginal fistula!! Please join our private group on facebook, there are about 20 of us now around the world. we are like sisters and are supporting eachother through every step of the way! Its called "living with a obstetric fistula"

How is it going for you now, I have the same problem going to see a Dr. in a couple of weeks to see if he can repair my recto vagina fistula. It is horrible going through this

The selfish part of me is happy not to be alone and the rest of me is saddened since I would not wish this on my worst enemy. I have had 3 failed flap repairs and am on my fourth (so far so good) but had to have a colostomy to help my chances for sucess. They found my abcess while I was pregnant with my first child. Put me through a cancer scare and the whole 9 before stating it was a fistula and told me I would have to deliver by c section. I dreamt of a vaginal delivery and was devastated. 6 mo after my son was born I had my first surgery everything was cleaned and the seton placed. No one told me how painful this would be and I literally would have to jump in a bath or shower every time I used the restroom. I was told that my rvf was small but would need a simple flap repair. Before I could schedule the repair my surgeon was offered a job in Cali and I was left hunting for another doctor. At this point I only passed minimal gas through the vagina and not once did one doctor ever tell me there was a risk of it getting bigger or worse. Finally I found another doctor but a month before surgery I found out I was pregnant with my daughter. After another made c section, 6 months later I had my repair. It failed within 3 days and ripped bigger so to my surprise when the feces came through I was in a panic and all the doctor could tell me was to quit drinking pop, juice and coffee that maybe if I could get my movements down to once a day that I could go back to a normal life, Lmao. I couldn't believe my ears, my obgyn couldn't believe it either she knew I never had an issue with feces passing through and forewarned me the dangers of my husband and I having sex. I told that doctor I'm only 40 and want to be able to be with my husband and he tried telling me sex was safe. I left his office and never returned. Finally found another doctor, just to have another failed repair within the first week :( I knew I couldn't live with the fistula, even showering 2-3 times a day I was catching infections left and right. Next option colostomy. That's were I am now 6 weeks into my colostomy, 3 weeks into hopefully my last fistula repair. My doctors appt is Monday and if everything is still intact and healing properly with any luck I should be having my reversal in about a month. No one knows what stress caused my fistula one doc felt it could be either from past endometriosis and one doctor thought it was due to a teenage rape and just never presented itself until the pregnancy. All I know is I have never prayed so hard or so much. Hopefully all of this will be over soon, if not life with colostomy is going to take more getting used to :( I can't stand the weight restriction and can't wait until I'm able to pick up my now almost 3 year old and my 9 mo old :)