Recto-Vaginal Fistulas - Part 5

I went to see the stoma care nurse on Friday, and have an appt with the Prof tomorrow afternoon. I'm only really coming out of what was probably post natal depression, and really don't think I can cope with waking up after surgery with an ileostomy. I will ask the Prof whether a first repair, if it fails, could make the fistula worse. If not, I might go with a first attempt without a stoma. I'm also thinking of deferring any surgery until early next year. I've a couple of months of maternity leave left, and really want to enjoy that with my baby, rather than having an op. Anyone know if leaving the fistula as is could cause more damage? They've not been jumping over themselves to repair it so far!

Teya
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Teya-How far post delievery are you? You may want to wait. Seriosuly reread the posts when you make a decision. All situatiosn are different! However I had a repair that made my fistual (which was small) huge and unbearable then had the stoma and repair that did finally after two years fix the problem. It is often a long process...and the surgeon who did the first repair said it would NOT get bigger and it did, so do your research-ask lots of questions!!! Best B

Hey all-all is good just busy with life, always check in....just wanted to add that....be good ladues.

Bea, Penny, CJ-many hugs! beegirl

I've decided to hold off on any surgery and enjoy my baby while he is a baby. He's just over 4 months old, so it's not been that long since delivery, and the symptoms are so much better than they were at first, didn't help that I was on laxatives for the 4th degree tear. The Prof said I'd thought things through logically and that my decision wasn't a bad one. He also said that any attempt at a repair, if it failed, could make things worse, so at least he is being honest with me. He said to watch out for infection, but other than that, to enjoy my little one. He said he'd be there to perform surgery if and when I'm ready. I'm going for a 2nd opinion at St Mark's anyway, more so that I get some connection with the hospital, as if I do go for a repair in the future, it will likely be there, as it's the specialist hospital. Will let you know how I get on :O)

Teya

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Greetings oh fellow RVF ers.....! Did that come out right? I was taking the time to check the site and see where Cj asked a ?? The reason I had sphincter muscle failure was the result of a fistula surgery done back in 1992..(6 months after my 1st colon resection )..It was not an rvf, it actually tunneled it's way to the skin right next to the anal opening...and I could actually treat it like a pimple...drain it, and then it would go away and comeback in a few months.....but...........had to have a surgeon look at it.....had the surgery, which was very very painful because he put in a seton( mesh screen ) and that was not pleasant at all, I was a big ole baby and he felt bad for me, removed it and what happened was the muscles never fully healed, so for 17 years I had a deterioriating leakage problem.....(my spelling is horrible too) due to deteriorating muscles there, so I opted for the overlapping anal sphincterplasy, which ironically worked BUT got myself a nasty ole RVF also. The attempted repair(s) made the hole even bigger and a terrible infection that I had to have the colostomy, which after 6 months with that I am back to a small, but livable rvf....Like you CJ, most days are ok, but too if I try to "hold back" it will transfer in...transfer being my new adjective!! I think about another surgery once in awhile , but then I eat strawberry ice cream until the thought goes away. So with diet, immodium, probiotics and a pretty good attitude i can and will live this way for awhile. I have told my daughter that when the time comes that I can no longer handle this I am to have another permanent colostomy. Bea, beegirl and Penny...hope all is going well and to the newbies...hang in there, ask questions, research research....
flower

Hey Ladies-

Flower-good to here you are well. I am with you on living with it. I hope we all heal perfectly, but you know what in the wide scope of the world it is just a small imperfection. Hope you are well.

Bea-many hugs!

Penny-how are you?

CJ-I hope you are still doing ok.

All newbies-this is a great site and there is hope!!!

beegirl

Hi beegirl, flower and al,

Am glad to hear people are doing well enough. I am doing pretty well. flower, do you feel your sphincteroplasty was a total success? My issues from mine have improved with the probiotics, fiber pills and imodium although there are still days where my issue interferes with walks and shopping, etc. I think I have more anxiety than I need about the possibility of problems. Recently I stopped taking the fiber pills thinking I might not need them and I started having to go multiple times in the day and began to worry about how could I work and run to the restroom at the same time. I went to CA to visit my daughter and the time change coming back threw me for a loop. Years back now I've wanted to take a trip to Italy but can't imagine having to deal with having to go to the bathroom fairly soon in a strange place in the middle of a tour. I'm still working on that one! But I don't want the fear of problems getting in the way of doing things. I actually did much better than I thought I would on walks and day trips with my daughter. I pretty much had to go when things were planned and all in all things went well. I see my surgeon for a general check up in June and am curious to hear if there is any other option for me short of another surgery which I'm not interested in either for now.
Take care all. Hope we can all enjoy the weather and focus on all the good things in our lives!
Penny

Hi Penny !! There are days when I feel the sphin-plasty was a total success and for the most part it was, I don't have that sense of urgency I used to have to "get to the bathroom" now. It's just if I have diarrhea it comes ooops...transfers thru the rvf which I was told by 2 surgeons that it is healed and no longer there...like we all know that's true...I don't seem to have the aniexty that I have had in the past so that helps too. What kinds of fiber pills do you take? I was taking benefiber by the boatloads and some times it helped and other times, not. I think the probiotic works the best with the exception of the immodium. I always go multiple times a day so the best I try for is firmer stools....Let me know what your surgeon has to say, I am debating whether to even go back to mine at all...prolly just get depressed or pacified. I am enjoying the weather, getting ready for a trip to FL with hubby and daughter, so I am looking forward to that. Everyone else...Get out . and enjoy the sunshine !!
flower

Hi Flower,
Enjoy your trip to Florida. Sounds like fun. I take a generic fiber pill from Rite Aid but it's really the psyllium husk I look for. I take 3 or 4 each night and it just seems to help limiting my trips to the bathroom. I always try to just go once or twice in the morning starting at 6 am which leaves my day more stress free. When I do end up having to go again I have a really irritated feeling, both mentally and physically, and I can't imagine doing anything else but go to the bathroom as soon as I can. Sometimes I get that feeling and their's nothing there, just feels irritated and it's hard for me to focus on what I'm doing. Maybe I should be working on accepting that feeling? I'll keep you posted on my MD visit next month. Would love to not have the leaking which happens rarely but still does so the worry of it is there. Take care,
Penny

Hi everyone. I'm afraid I'm the newest member to this horrible little group. :-( I've been diagnosed with an RVF after the birth of my son a few months ago. I had a 3-4 degree tear (there's some question about how bad it was), and apparently the stitching up was either done wrong or I'm just unlucky. I had gas through the vagina pretty soon after the birth but I stupidly didn't think it was a big deal. After a few months, I had one incident where I thought there might have been a little bit of stool (just a little speck) that came out there but at the time I didn't know anything about fistulas so thought I must have just imagined it. (Just the other day I had the same thing happen, and now I know exactly what it is!) But I had granulation tissue that would not heal, so finally my midwife referred me to a urogyncologist last month. He said I have an RVF. He also said I have a separate anal fistula. Has anyone else had that problem too?

I have read every single post on this board, done lots of my own research, and been working with my midwife, a physical therapist, and a counselor. But I'm not feeling very hopeful. My RVF symptoms are mild now--very small amounts of stool have passed only a couple times and the gas is also rare. Seeing how so many people haven't had success from their surgeries makes me wonder if I should just leave things alone for now, but then there's this anal fistula. That is causing me a lot of discomfort and makes it hard to sit, hard to hold my son. I just feel like this is a nightmare I can't find my way out of. I'm not as strong as all the amazing women here. I am pretty much a mess, spend my days crying, and have no one to talk to about this. (Hubby's trying to be supportive, but it's hard for him to understand.) I am supposed to have a follow up with the first doc this week to discuss what he thinks about surgery, but no matter what I'm going to a CRS. I got some names of the best surgeons in town, so I'll be seeing one of them soon.

Best of luck to everyone, and thank you all for sharing your stories online.

Hi TY2,
Sorry you've had to join us but glad you found us. I really don't think any of us considered ourselves brave when we started on our journeys. We'd all just as soon have run the other way but when you're in the position we're in there's no way to go but full steam ahead. I think you do need to give the frustration its due. We're in a hard place but with support, time and knowledge we make the best choices we can and hope for the best. Some people have what you've experienced and chosen to hold off on more surgery. I'm afraid I don't know what your anal fistula is like or the symptoms. Would that be a more straightforward repair? It sounds like it would be really annoying if it affects your sitting. Hopefully, you'll find out more when you go to the CR MD. For some people fixing these things has just required one surgery and they're all set. Sometimes it's much more complicated but I wouldn't jump to that right away. Hopefully, things will be easier for you. I know it's hard not to jump to the worse case scenario. Good luck, whatever you decide. Keep us posted. Hopefully, the other posters will check in and offer suggestions!
Penny

Hi Penny,

I just want to complement you on this one. Sometimes it is important to let your self go but also it is important to take back the control that you had once. It is hard thing that you all are going through and I wish you all good luck and all the best.



How are you all doing now? Slower09, Penny, TY2?

Penny, thanks so much for the encouraging words, really. This week has been a real low point. I am trying to remind myself that I am only at the beginning of this process and need to see what is going to happen. As you know, it's so difficult not to jump to the worst case scenario, especially when you're feeling so down about your body and its capacity to function properly.

And thanks to all the wonderful people who have posted on this thread, I have been able to go into my doctor's apps with much more info. I had an appointment with a urogyn and by asking the right questions I could tell pretty quickly he didn't have much experience, didn't know anything about complicating factors, and didn't appreciate how hard this is emotionally. I'm trying to pat myself on the back for taking control of what I can and advocating for my own health. Feels like cold comfort though. :-(

Ha, I keep feeling like this thread is war report, and the battled hardened veterans have so much to share with us scared new recruits. We have no idea what we're in for!

Hopefully everyone else is doing well and continues to heal!

Hello everyone and TY2..I am sorry you had to find this site...but..we are here, all of us sharing the same situations with little different outcomes, reasons..etc. We all have had different experiences with these RVF and informing yourself with as much info as you head off to see the merry, knowledgable and then not so knowledgable doctors. Just make sure the surgeon fully understands the complications and the stubborness that these things can present..Does your anal fistula come out somewhere on the surface? where does it attach itself to? .
How is everyone else doing? B, Beegirl, CJ, Penny...things are about the same with me.
I did my trip to Fl and did very well thanks mostly to the immodium, I did get into some bad nachos at the rainforest cafe and paid dearly that night...depressed me actually, but I just pushed onward. I am going to see my reg doc next month for my lady annual and it will be interesting to see if she can detect anything that isn't right...after all, I had 2 surgeons tell me I was healed and had the reversal done and my goodness guess what?? still stool presenting itself where it ought NOT to be...oh yes, I was told that was "transfer" That kills me....what is "transfer" as opposed to leaking thru a rvf? How does stool "transfer" from one place to another mmm? I am venting and this transfer phrase really ticks me off.... I am to the point where I just tell my family I am doing great but I think my husband suspects otherwise....so it's been since Feb when I had the reversal and things are not much better so I think the healing, is done as much as it will get....anyhoo....I hope everyone else out there is having good days and results and remember we are strong and here for one another !! take care all

flower

Flower,

Ha, I totally understand your post... Ugh, I know I am having some stool come through, but am not even asking. It is very little and only once in awhile. I am afraid because it is a low rvf that sexual intercourse may cause issues... oh well, can't stop our lives right? But I am with you Flower. Be good, B

All-thinking of you guys all the time...beegirl

Hi flower, et al,
I think I know how you feel. Being on vacation you have higher expectations of having good days and enjoying yourself. The first time I went to CA to visit my daughter I had an accident, due to my sphincter issues, not the RVF, but was mortified. Luckily it was at home. This last trip things went better but still not issue free. IT's hard to accept that I have an issue and it'll always be something I have to be aware of. I try not to burden everyone but I do let me husband know if things have been more difficult lately. I have to tell someone and there's not that many people who you can share this with. Sometimes things go so well for a while I forget to eat healthier and then things catch up.... I go see the CR surgeon Monday. See if there's been any new theories on sphincter improvement with no surgery. I think my chances are slim to none but all in all I can't complain too much.
Hang in there. Hoping everyone's in a good enough place.
Penny