Recto-Vaginal Fistulas - Part 5

Hi All,

Posie is back. Yes, my second flap with cadaver graft failed so I had to take some time off...I know that everyone here understands the ultimate letdown of a surgery failing.

I got a second opinion and am now scheduling an ultrasound and possibly a sphincteroplasty with a new CRS. I'm a little worried about a sphincteroplasty but I was given that option before trying a martius flap. I was told a martius flap would likely result in sexual discomfort. Any thoughts?

Sorry to have left the board without any news but the disappointment was overwhelming. My family is again facing a period w/o mom and that's probably the hardest part. I can put up with pain but I hate not being the mom they need and deserve.

I'll keep posting and I hope you all will too.

Love and prayers,
Posie

Hi everyone! I too am an RVF sufferer for almost 3 years. 1 week after my adorable 6.7 baby's birth I experienced the oh so embarrassing symptoms of RVF. At first my fistula was big, but 3 month later when I saw the specialist for pelvic floor dysfunction it shrank to a pin-size. I had a repair 1 year later that failed, and then a second failed repair with laser via colonoscopy (NEVER TRY THAT! SOME INEXPERIENCED GASTROENTEROLOGIST THAT WAS SUPPOSED TO TEST ME FOR CROHNS DESEASE DECIDED THAT IT'S AN EFFECTIVE WAY TO REPAIR A FISTULA. AND NOW MY FISTULA DOUBLED ITS SIZE AFTER REOPENING). my fistula is now a little bigger than a pin head size. And I need your opinion: I'm now expecting a baby. Did anyone with an unrepaired fistula have a successful natural delivery? I know that after a successful repair you need a C-section so not to cause the fistula to reopen. But if the fistula is still open, is there a chance that it will not get bigger? The reason I have such high hopes is that I've seen a top doctor at MT Sinai Medical Center (hopefully after this baby he will repair my fistula) He told me that my fistula has a 90% chance of of not getting bigger with a natural delivery, though he would still recommend c-section. Am I out of my mind if I try natural? Has anyone ever done that?

Hi Nancy here my fisyula is pretty much healed all the way returned to work and then after only 2 weeks back I got an internal hernia ( from a gastric bypass that I am 3 years post op) But my fistula repair has stayed healed and boy did I do heavy duty throwing up causing the fistula repair to be tested. This is to Katie I believe I had 3 children after my fistula intially appeared 26 years ago. the fistula itself did not seem to get worse or better. keep in mind my fistula was injury related only and I was healthy at that time. In fact I think a person should complete their family prior to the repair unless you have an exceptional support system to assist you cause you cannot cannot break the rules ---- lifting , time off from work, ect. and make sure you have a good hemoglobin prior to surgery I was so anemic it is amazing that the repair healed.. I am currently fighting anemia again now and do worry about the repair.. oh yeh sex is very painfull after repair--- it causes small rips in the vaginal area and so I have to wait for the rips to heal before trying again. scar tissue is very unforgiving. hopefully my husband can continue to be patient . Good luck to everyone out there I am a success story as far as the fistula repair goes.....

My heart goes out to the poster with the failed repair attempt. I have an obstetrical RVF that was first misdiagnosed as a Bartholin gland cyst. So how did the surgeries go: 1: Bartholin gland marsupialization; 2: granulation tissue removal (wonder why that gland wasn't healing?) 3: granulation tissue removal again and insertion of a seton (aha! it's an RVF... no wonder it wasn't healing) 4: plug -- failed -- devastation followed; 5: seton back in and ileostomy placed (trying to be conservative since I already have boatloads of scar tissue) and tomorrow is 6: transperineal repair.

I'm *terrified*. Both re the surgery/recovery and also re probability of success. Anyone had a transperineal repair? The kind that is not supposed to go into the rectal muscle? Any thoughts on recovery? Thanks in advance....

It's been a while since I've commented. I've still not had the fistula repaired - the idea of not being able to lift my baby for 6 weeks after a repair has put me off. I think the hole is definately bigger, stool comes through each time, but I use a tampon straight after, and then another, after which time it's all pretty much cleared. Still think that's easier than living with a colostomy, but I'm more scared of the fact that a failed repair could make things worse, and that the surgery itself, could lead to faecial incontinence, which I don't have at the moment.

I've sued our local hospital. The Chief Executive of the Trust that runs it has sent me a formal letter of apology, stating that I had received substandard care. My solicitors have also received a letter from the Trust saying that delayed second stage labour with inadequate monitoring caused the button hole tear. Compensation should cover having the repair done privately, but I really don't want the surgery. Obviously I want the symptoms to go away, but at the moment it's little worse than a monthly period, and if I eat healthily, lasts about an hour in the day. Is it worth having a colostomy for up to 18 months, with the possibility of a failed repair for that?

Did just read someone's comment who had a repair without colostomy, who went for the op after losing weight and getting more symptoms as a result - I'm on weightwatchers and starting to lose weight, was hoping that would make things better, really hoping it doesn't make things worse!!!

Bea et al .. how are you all???

Teya

xxx

Hello everyone! I go to my first consult for the rvf in feb. I just wanted to ask the previous poster, teya if she has gone to a colorectal surgeon yet? My baby is 7 months and symptoms aren't horrible mostly air, although when I have my period its present when I wipe backdoor...maybe its bigger on the vaginal side who knows! Both of the OBs who looked couldn't see it but obviously its there!

I just wanted to say don't jump to the idea of an ostomy, there are plenty of women who get it resolved without one. ***edited by moderator*** web addresses not allowedactually has posts on this topic. It isn't as rare as we think which is sad! Mine is a result of childbirth as well, she was big and sunnyside up which resulted in stage 4 tear........good luck with your decision!

Hope everyone is doing well


Katie

Wow! No posts for ages and then you all post at once!

Posie - so so sorry to hear your news. I know what you mean when the repairs fail you sometimes want to drop out of posting etc. I think what you call a spchinteroplasty is what is called in the UK an anterior spchinter muscle repair. Is it where they overlap the msucles to heal the hole? I had that and a martius graft at the same time . I have not heard anything about a martius graft causing sexual discomfort and while I haven't tried so far I can't see why it would hurt anymore than after the other ops. my last op healed the RVF but I have an anal fistula now - but I know I am tough case.

Teya - I strongly recommend that you see Miss Carolynne Vaisey at ST Marks hospital (Trust Plus is the private wing there) about your repair options. She is so good. She tells it to you straight. You could have a private consutlation just to get the info and then go away and think about it. To you and all the others out there baulking at the idea of a colostomy I would say (1) yes repairs without a colostony can work but it is only worth trying once or twice without a colostomy (2) Everytime you have a repair your body produces scar tissue - the scar tissue reduces the chance that the next operation will work (so if you have lots of failed repairs without the colostomy that will reduce the chance of it ever healing.) (3) a colostomy is not something I'd choose but it is not as bad as you think - honest I've been there. Also if the repair works first time you may only have it for 6 months. (4) one option is to live with it and have no surgery. I sometimes wonder if I knew what I was going to go through if I would still go though it. There are risks of becoming incontinent or having less bowel control. There is risks of never getting it fixed haveing a permanent colostomy. I may have to live with an anal fistula. I just don't know. All I do know i that once you start to have surgery you often seem to have to keep going and whether you are a Mom or not it eats into your life - the endless surgery, recovery, investigations.

To everyone - do not get a gynaecologist to do the repair. It is a bowel problem so you want a bowel specialist. I've not heard of one gynae who has fixed a fistula so far.

Guest - I don't know what a transperineal repair is so I can't help - but you need to be clear what it is and the risks etc so go back to your doctor and get those answers.

Sorry to reply to to you all. But I hope you all get fixed first time/next time. I just hope you get some suport from all the posters here.

Bea
xxx

Hi Everyone!

I have an RVF caused by childbirth, had it for about 14 years. Due to being young, embarrassed etc never told anyone about it. Even now I find it hard to talk about! Last few years I have been to docs etc, had various tests & after 2 years off being fobbed off they finally found it. I was so happy to be told yes you have an RVF, lol makes me laugh that i was happy to hear that but i was always made to feel i was making it up, stupid doctors.
I had the advancement flap surgery in december, first week was great i was able to hold wind in, had no leaks i was so pleased. Then I got ill with flu, then followed by a stomach bug & after that i realised it was infected, took awhile for the infection to clear up. And now because of the constant sneezing, diarrhea & infection i know it hasn't worked. Feel so gutted that i got so ill after the op, i'm sure the op would of worked otherwise. Seeing my surgeon again on the 7th, tell him everything that's gone on & see where i go from here.
I go back to work next week & i'm so worried of what i will do if i need a BM at work, how i'm going to clean myself up. Guess I'll just go home if it's that bad.
I think the hardest thing about all of this is not having someone to talk to that understands it, my hubby tries bless him. Like i've read from other posts after a failed repair you do go on a complete downer, i'm there now & it's hard to come out of it.

Nic

hi nicz30 sorry to hear about your RVF how many weeks out are you _ i was three weeks out having leaking issues and mine managed to heal - i did not have the infection you have gotten but I had some explosive diarrea COME THROUGH A FEW TIMES my fistul has healed but boy I am sure worried about it since i have had other issues going on -- internal hernia that caused a bowel onstrution -- chronic anemia--- but mine still healed it your dr may decide ( hope he is a colorectal surgeon ) to do a freshening surgery make sure he puts you on oral antibiotics for a period of time after the surgery. a freshening surgey is something where the surgeon cuts away the tissue that is not healthy and hopefully the tissue meshes----- I know all about the embarassment I went 26 years before getting help but be persistant and positive -- you healing could just be slow who knows good luck nancy


to the person who asked the question about weight loss. I was an issue for my as I had the bypass surgey so my weight loss was very accelerated I thing if you lose it slow and healthy you will not run into the trouble I did. and remember the fistula had always been a problem but loosing a lot of weight so fast exasberbated the problem to degree--- somtimes you just cant win. i am hoping I just get better from all my health ailment nancy

Hi Nancy,

I am 6 weeks post op. When I went about my last infection the nurse saw that some of my stitches hadnt dissolved yet. Maybe thats a good thing & i am a slow healer. I hope so.
Yeah i am under a colorectal surgeon, he is very nice. He hasn't had alot of experience with this type of fistula & he was talking about referring me to one of his colleagues in another hospital who deals with fistulas lot more than he does, he might just refer me to him rather than do anything else to me.
Thank you Nancy & i hope everything works out for you too.
Nic x

Katie - in response to your question, I've seen 3 colorectal surgeons, 4 if you count the first one that the NHS trust sent me to. As some of you might know, NHS wait times are not always the best, but 2 weeks after giving birth to my baby boy (he was born on Xmas eve 2009), I was seen by a gynae, who sent me down to see the colorectal surgeon that day. He referred me to a professor at the Royal London, when I then switched to private healthcare - I have cover through work for any issues post childbirth, but it doesn't cover maternity itself. He said I needed to heal for a few months prior to tests, and then after an MRI and physiology tests, he referred me to his group lead, another Prof at the Royal London. I saw him iat the London Independent (where my best friend died of a failed colostomy in 2007) n early May and he said that for the best chance of repair I should have an ileostomy for between 6-18 months depending on repair time. The earliest he could do the surgery was the first week of June. I was due back to work on 4th July. He said I'd need around 6 weeks off after the surgery, and wouldn't be able to lift anything heavier than 10lb for at least 4 weeks .. my baby was heavier than that by then. I would also need another 4-6 weeks off after reversal. There was around an 80% chance of success with ostomy, 50% without, but a 10% risk that they surgery itself, given how they need to enter the bowel, could leave me incontinent, which I'm not for stool at the moment. Ok, so it's only 10%, but only 0.01% of births result in this injury in the first place, I'm just not a lucky person! I told him I'd delay the surgery until my baby was less reliant on me .. I wanted to enjoy him while I could, the last 5 months had been hellish, the drugs they gave me for blood pressure caused depression .. just what you need when you have the baby blues! He said that it was a sensible decision and not a bad one.


I then went and saw another professor at St Marks - Bea - saw Prof Phillips, pretty much the top guy there? He did another sigmoidoscopy and pretty much said the same as the Prof at the Royal London - didn't think there was the 10% risk, said that was upto the skill of the surgeon, but suggested that part of my labia (sp?!) should be used as a barrier. I told him I was thinking of deferring repair until George was older, he said that was a sensible decision, I couldn't make it worse using tampons to clear out the cr*p, and to run as far and fast from the surgeon if possible! He also said it would help with any surgery if I lost some weight ( was still and am still carrying baby weight!).

This Friday I see another surgeon for an independent view of my injury in order to progress my claim with the Trust. Doubt he'll say much different.

It's not great, but I've had a horrid horrid cold the last week, and my fistula symptoms are nothing compared. I'm a woman, I've suffered a lifetime of heavy periods so a couple of tampons a day is liveable with .. at the moment. If things get worse, I'll definately get a repair done at St Marks - Bea - would you say your surgeon was more skilled in this area than Prof Phillips? I just can't see how I'd be able to look after my son for the 6 weeks or so after major surgery, my husband works shifts, he won't be able to take that much time off, my Mum is 70 now and can't look after the both of us. My settlement claim could help pay for a someone to help, but I don't really want a stranger in my house looking after my baby. If I can wait til he's 5 or 6, and able to understand that Mummy can't pick him up, then I will. You never know, they might have invented a miracle laser that will just zap the hole shut ... yeah right!

In some ways I just wish they'd attempted a repair straight after I told them that things weren't right after the birth, all would be done now. But there is no point dwelling on the past.
Teya
xx

Well I've just spent a great deal of time reading EVERY single post in all 5 threads. I got kind of disappointed these last couple of pages it seems a few have dropped off the site and I'm left wondering how they are now. I hope they can come back and update. Hopefully they are all doing well.

Here's my story...I delivered my only child in June 2000. She was 9 lbs 1 oz and I had an episostomy and a 4th degree tear. The delivering doc stitched me up there. I ended up staying in the hospital for 3 days because I couldn't pee on my own. Once my soon to be husband and I started having sex again I noticed things were a lot looser and it was actually pretty nice. I was also noticing gas passing through the wrong location and some stool as well. My gyno sent me to some sort of gyno that did these type of surgeries. He repaired my perineal area. He told me he was really proud of my surgery because he made me so tight like I had never had sex before. m***n. No one ever told me I had a fistula. I was told I had a hole and they would fix that area. The fistula went away but sex was now extremely painful.

Fast forward to spring 2009. I get another fistula. My primary doc sent me to the gyno who got me a referral to general surgery. At this time we're living in Japan, husband is in the military, and they have no specialists there. Of course I never knew I needed one either. Anyway my general surgeon visually examined me and couldn't see anything so he did an exam under anesthesia. He did find it, he ran blue dye through the tract to see exactly where it was. A couple weeks later he placed a seton so the tract would drain and hopefully shrink up. A few more weeks and he took out the seton and placed a plug. I healed up pretty well. About 4 months later the fistula symptoms were back. I wasn't sure at first, wishful thinking I guess and waited to see if I was just imagining the symptoms. Well of course it really was back, duh me. The same surgeon did another plug, without doing the seton or dye this time, and the plug actually fell out about 2 days later. Super huge disappointment.

At this point is when he said I do need a colorectal surgeon. So I was medevac'd to San Diego. This was where the closest military doc was located. I went once and she immediately wanted to schedule to do an anterior advancement flap. So I flew back home to Japan got things settled for my daughter to stay with friends there and then my husband and I flew to San Diego for me to have this surgery. Less than two weeks after surgery I had awful pain. I went to the bathroom and there was stool again where it shouldn't be. My first post op follow up was still over a week away. At the appointment she did another EUA and said it looked great things are healing fine and she saw no fistula. We got sent back to Japan and two weeks later I had some significant bleeding from my butt, blood was dripping in the toilet. Ended up going into the ER and I guess since the bleeding wasn't all that severe they just had me see general surgery the next day. My original doc was deployed so I had to see someone else. He took me in for another EUA and said he used some foam or something to stop the bleeding. A month later I went back to San Diego for another follow up with the CRS. She said the flap was great except for the middle part of it was like a divet and she just made a little slice to open it up there. She said it would heal in like 6 weeks. One month later my husband is finally retired from the Marine Corps and we're living in Pennsylvania. Time to start over with new docs.

I am now seeing a CRS at Penn State Hershey Medical Center. I had my first appointment last Monday. He couldn't see my hole visually of course, they never can. He had me do a defocography last Wednesday. He called me and said I do have a rvf and he wants to do more tests and then sit down to discuss what to do. He wants to do a manometry, an ultrasound, a colonoscopy, and another EUA. Then we get to talk. Right now I'm just waiting to hear from them on when my tests will be.

I must say I'm pretty pissed none of my other docs did any testing (correction, the general surgeon did a cat scan before my first plug to see if I was infected which I wasn't). I never knew there was all this testing to be done. I'm pissed this so called specialist I saw in San Diego was so damned confident and I just blindly believed her because she was a "specialist". Stupid me. I did try googling back in summer 2009 to no avail. Tried again the other day and this huge thread came up thankfully. Lots of information here.

I have seen there were a few military wives posting here and to you guys I suggest getting out of the MTF and going to a civilian doc. Make them give you a referral to someplace great with great docs.

Since my flap in August 2010 I have bleeding every couple of days, usually just a small spot though. I have gas all the time and stool on average every other day. I also have pain and I haven't really been able to relate it to any specific type of BM or activity. I don't really do any activities anymore because of the pain and discomfort I do get. Doing laundry causes me pain. My husband is a big help and he tries to understand and do what he can to ease my pain.

My new CRS said my defocography indicated I do have a loss of sensation in my rectum. Then I go and read all of your posts about ostomies and have a bad feeling that's where I'm headed.

9 surgeries and counting for me.

PS. Sorry this is so long.

Hi All,

Lishy 75 - Sorry to read your story. If you've read all the posts I can't really add to the advice already there. I can only say that it is an up and down experience having these repairs and that the ostomies are not so bad (honestly). Please keep us posted and if you need to vent on this site then do so as it is difficult to talk about RVFs to other people.

Teya - You did see the top man at St Marks and he was recommended by Flower's doctor when I was asking people for ideas of where to go for a second opinion. Sounds like you are holding off on more surgery for a bit anyway. I can't compare Prof Philips with Miss Vaisey as I've not met him but he should be good and there is an element of personal connection - you need to trust them. If you trust him then stick with him. I chose Miss Vaisey after reading her brief summery of experience on the St Mark's website and also because I worried that Prof Philips might be too high up and that I might not see him so much and be seen by his registrars. I usually see Miss Vaisey herself (and I'm on the NHS) and that counts for a lot because I feel I do need her experience and expertise. Re the labia thing - that is what I had last time in July. I think that there is a pad of fatty tissue which sits underneath the labia. They go under the skin and get the fatty tissue and use that to help reconstruct the tissue between the vagina and the rectum. There is no incision around the labia but it did hurt/ache sometimes afterwards where they'd taken the tissue. It appears that this technique worked for me in so far as as I now have an anal fistula rather than an RVF (I think).

Hope everyone elese is OK. As someone else said I'd love to know how Flower, Beegirl and Penny are getting on as they seem to have accepted life as they now are and stopped posting but I don't know how good their fistulas are and bowels control is.

Bea

lishy75 - I had the same issue - I come back here ever so often to give hope.
I'll keep this short. I went to Dr. Hota in Cambridge Mass - she was amazing and fixed me on the first try.
It was a few days after having my son I realized something was wrong. My OB dr was clearly disturbed and got me into Dr. Hota the following Monday with an emergency visit. I was told this was not normal, etc. I'm still peeved over this and sex is still fairly painful at first but in the end I have no symptoms and it has been 2 yrs.
I see you fly around for a good surgeon, etc. I highly recommend her. I don't see many people post here with good recoveries. I may have been one of the lucky ones.
good luck to you and remember you are not alone!

Hi Again - I just read through some of the trails here...I want to stress there is hope.
I think you need to go to an excellent specialist. The Boston area have the best specialists in the country.
During recovery you need to be VERY careful for 2 months to not strain, lift, etc. I had this done w/ a new born - i wasn't willing to wait and it was hard but it was worth it in the end...a few weeks of not running around proved to help me heal.
I wish everyone luck and will continue to check if anyone has issues.
It is an awful thing we have gone through - I cannot believe Dr's get away w/ this. Pointless discussion now when everything is said and done. My family wanted me to sue but in the end I just wanted to be healed and quietly continue on life normal.
There really is hope..good luck ladies.