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hi, B,



i really appreciated your reply. none of my acquaintace had fistula, and when i mentioned my bad luck to some of my friends, they were like, what? what's that?



in which area are you? if it's not too far away, i might think about going there. at this point i really really really want to find sb trustable who can bring me back to normal. eeerk!



what about your girlfriend who had fistula? did the colorectal surgeon she recommended fix her problem?



i don't have any control issue, does that mean that my sphincter is not damaged? i didn't have any problem until 4 weeks after child birth, now i was wondering if i paid more attention to the hygenic stuff i might not have the fistula developed?

sigh, never ever in my life have i imagined that i have to go through this, as i looked at some of my photos taken one or two years ago, i was like, how i want to go back to that time where i still have a functionable butt and vagina.

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thank you, penny. so i'll ask the gyn to recommend colorectal surgeon to me.

if i understood correctly, only the colorectal surgeon can fix us, not the gyn? or both colorectal surgeon and gyn should take part in the surgery?

i searched online, there's only one colorectal surgeon in our area, so it seems that i don't have any choice.

does anybody else have same symptoms as i do? i've looked through the whole website, apparently my symptoms are a bit strange:
--- drainage out of perineum. after i use the toilette tissue to dry out the drainage out of the perineum, it feels like as if there is a hole underneath the perineum, and when i push up at this point, air comes out of my vagina

---i tried to have sex for once 10 weeks after child birth, and several hours after the sex i found a few drops of fresh blood sipping out the episiotomy(perineum), i'm pretty certain that it's not from vagina, but then one surgeon checked me up, he didn't find any wound in perineum, i really don't know where the fresh blood came from.

thank you every one! same as Penny i really hope that we can hear some positive new from somebody somewhere.

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Hi All! I also developed a very small RVF after the delivery of my baby in JUly 2007. I want to know if the person who posted this message is still reading these boards:

Posted: 10/30/08 - 02:00 Post subject: why fix it?

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Hi Ladies,
From reading all this, I am sure I have a very small recto vaginal fistula. i had a baby 5.5 mos ago with a 3rd degree episiotomy. Ever since then, when I am sitting in a chair a certain way, when I pass gas, some air seeps through the vagina. I haven't noticed any feces passing through the vagina and I haven't gotten any bacteria infections, urine infections, or yeast infections.
Should I fix this? It seems like the fixing it might be worse than just dealing with it. Unless of course it gets bigger. What is the downside, if any, to just leaving it as is and dealing with it? Is there any other side affects I should know about with not fixing a very small recto vaginal fistula?

Thanks!
_____________________________________________________

I have the exact same symptoms, but cannot find a doctor who really believes me because a. they can't find a fistula and b. the gas doesn't always go through into my vaginal...only when I am sitting/standing in certain positions!

If you are still reading the boards please post again so we can get in contact!!!
Thanks!!!

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Pergamom- NY... I am sure there are more docs. around, you may have to do a ton of research...Fistulas from childbirth aren't all that common, but not completely rare either...My friend, met through another friend, did end up having decent results...she is not a 100%, but much better than she was...she did, like me, have an ostomy for some time and had many failed surgeries before things worked.

My fistula is low like yours.... I did pass gas and fecal matter. AFter my first failed surgery, a lot!!! My spinchter muscle is ok.... Your Dr. can tell you that after an examination...and you may want to write down a list of ?'s that you can ask...

I know this sounds weird. I have gone through many phases,:depression, anger, etc...., but really it is not the end. I believe it is all how you look at it... It does get easier... Wendy Powell has a website rvf support, she is a really nice woman google it...you can write her and she is super terrific. She went through this as well. There is also a book by SUsan Johnson called "A Better Woman." It may make you feel less alone.

Like Penny says there are no guarantees, that is why I said really wait a bit and see if it heals over... I NEVER WANT TO SCARE ANYONE!!! but mine did get worse after a failed surgery and I was told it wouldn't. I can't go back and I am not dwelling, I just want to let you know... there can be a chance scar tissue may make it smaller...I am not a Dr. and I am just telling you about myself and where my journery has taken me.

Anyway, do you have support? I am telling you, it will be ok...write your heart out. I swear, I know...it is tough, real tough...I went back to work today with my ostomy--ugh and I did ok, but I did have a slight leak...and you know what--whatever, there will be brighter days, and surely there will be harder ones...but whatever... I am just trying 2 laugh. ANd I am telling you, if you are sad, write her..these sites have helped me...it is refreshing to get advice and support! Thinking of you, b

Penny-if you read above, you'll see I had a slight leak out of my appliance that coated the paperish material around the flange, but I made it home to fix it... I called my et nurse to see where I can go from here...i really want to get this better controlled, as I am a high school teacher, ha.... ha. but I talked to the school nurse and she knows and I am gonna put my stuff in her office... I am only averaging about two days now...what is the concave??? Do u get more leaks if you have watery output??? ANyway, I am soooooooooooooo crossing my fingers for you--it is your time, you have been healing with the ostomy for a long time...so you're in a good place!!!!!!!!! ANd wish me luck at work tomorrow...I just don't wnt to stress about leaking...thinking of you. B

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Hi B,
Congrats on the return to work. That was a big step for me but did so much in making me feel normal again. I was so isolated at home and feeling so helpless about my MD and the future. OH, I meant convex, not concave. I guess it depends on how you look at the pouch %-) You're right about the liquidity. I was told the more liquid the greater the chance of leakage. But I found it impossible to not have it be liquid at least some of the time and I didn't want to take Musilex or whatever every day. I felt I was already going through so much I didn't want to not have a cup of tea or water without eating something to solidify things. So I went to the convex which helped a lot. I did have leakage twice at work but I was able to make it through the day without changing it. One of those days I had 2 clients cancel after I found the leak. What luck!! We take joy where we can!! I'm a social worker and have some flexibility but it was a real worry at first. Experience with it really helps. Good luck and thanks for your thoughts. I'm ready to have it done and move on.
Pergamom,
I started with a colorectal MD who tried a flap in my colon but that gave out after some months. Very disappointing. I"m now going to have it sewn on the vaginal side. That'll be try 2 and hopefully the last. I don't think the chances are too good that it'll have healed itself. That would feel like a miracle. It's a realy process and you need to take it one step at a time. Maybe your MD will have some advice on how to deal with the symptoms in the meantime. Let us know how it goes!

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B,
I forgot to ask how long were you out of work? Did you feel you needed that for your recovery? Thanks Penny

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Hi Everyone...

I cannot believe how busy this thread is. This is the second time now that it has been closed and moved to a new thread. I've been researching some more...even though I've been dealing with this now for 4 years...and I too was reading about undeveloped countries having these issues..but I canot believe how common it is even here in the USA lately. Not THAT common though, so there's not much out there on the issue.

I went in December 16th for another repair since my sphincterplasty in March did not hold. It turns out the muscle held pretty good, but 2 more tracts developed...one came out to my perineum, and the other went into my butt cheek where they had taken muscle from in March...it had nowhere to drain to so it had infected. After the procedure, the Dr. informed me that she doesn't think this will hold since I've had so much done (14 procedures) she didn't have much to work with. She said that if it doesn't hold, there's not much more she can do, and she will refer me up to Tacoma to a different specialist.

It's pretty discouraging that she doesn't even think it will work, but I feel pretty good lately and the incision is almost healed over so I guess I had about 50% chance that it DID work.

For those who don't know me...I had a baby in November 2004 and developed an RVF which was misdaignosed and not diagnosed at all until November 2005, when I started having procedures from setons, surgisis plugs, advancement flaps, complete sphincterplasty's...etc...my RVF is gone, but I still have perianal fistulas that developed from the surgeries, and slight loss of sphincter control.

This has been the hardest thing to deal with in my entire life...but I feel like it is finally coming to an end. My daughter just turned 4 in November, and I wouldn't trade her for anything in the world.

This board has been a complete lifesaver, knowing I'm not the only one out there dealing with these issues. It is really hard to go through something like this when no-one else that you know has gone through this or understands what you're going through, so it's nice to be able to come here and read and post about our experiences knowing other people understand what we're going through.

Penny, I'll be thinking of you on the 26th. What are you having done? Just the colo reversal, or another repair as well? Sorry I'm a bit behind...this board has been so active while I've been gone and I tried to catch up but skimmed quite a bit.

To the girl who has the symptoms of gas passing through the vagina and your doctor is telling you it's not there...please get a second opinion. I'm not the one who posted that post you asked about, but I was in the same condition, only passed gas sitting in a certain position, etc., and my midwife told me there was nothing wrong and "that's just what it feels like." You KNOW you're body, and if you know that's what's happening, please go see a colorectal specialist for a second opinion. There are many other tests/exams to see if there is a connection...many time you cannot feel it just with a finger exam!

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Penny, thanks...I touched base with my et nurse and we are working on getting an appointment this week to work on the issue. SHe is a saint!!!

That is great that you have flexibility...I took 3 weeks off, part of winter vac. because I am a teacher. I needed it more to get use to the appliance...but I was really tired and etc. I believe, for me, it was really the stoma surgery that caused me to take that much time off, not the fistula surgery. I was told I could go back in a week, if I was up to it...I was not and couldn't see how anyone would be. I needed more time. During my flap repair, I went back in a week, w/o stoma and I felt fine. Just took it real easy. I have been super tired after work each day, too. I fall asleep right after dinner.... exhausted. I hope to get my energy back soon. And if it helps, as far as ever taking work off, I barely do... I think besides having my daughter and this surgery I have only taken three days in seven years or so.

Oh, Penny did you notice that your lexapro was less effective after ilea. I am thinking of upping my dosage? Ne good, I am always thinking of you.

Pergamom-hang in there! Hope things are going well.

Guest-hang in there...you know your body...good luck.

Shellsue, it is amazing to hear that you are doing better!!!!!!!!!!I have read your points, always losing heart, with you....What a long, tough, journey. I am so glad you wrote!!!!!!!!!!!!

Best to all, b

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I am so bad at logining in before posting then I come up as guest, like the last post....sorry about the confusion...

Hey Guest--I thought about your post, didn't want to respond because I am always nervous about making anyone nervous. My fistula was pretty darn small...I did pass some fecal matter and gas, but as time went on, I believe it was much less, it got smaller and wasn't too much trouble if I watched what I ate, etc... I could use a pantyliner....anyway, I decided to get it fixed, when it was pretty annoying in the beginning, and planned surgery, but the Dr. wanted to wait 8 mos. from the birth of my daughter. Before surgery I asked him point blank if it could get bigger....he said no, so I said ok, let's try.... My fistula did get bigger, much bigger.... this is only my experience and I haven't heard too many women say the same, only a few on boards....

I now have an ostomy to help heal the repair that I had. repair #2.

I said in a post awhile back, I wish I just waited...let it be... I am not dwelling and I am sure not trying to say this will happen to you...I just guess I wish someone had warned me of the danger... but, who knows, fistulas are really annoying and hard to deal with...

Everyone-please add in, because I don't want to share a negative experience...and maybe someone has something positive to say about it....

Penny-went to the et nurse today about my leaking...she so helped me and gave me this seal (that I just ordered from edgepark) it is waterproof and awesome. Do you know what I mean? Also she had me rip the eakin and mold it differently then make wings like with the excess to fill in space where I was leaking-at my mid-line. I am very happy...she is great.... be good. b

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Hello everyone,
B I had my ileo about 2 weeks after my sphincteroplasty so I actually tried to hold off on going back to work until my reversal but that never happened. I think I went back to work after something like 10 weeks. I really felt shell shocked. I think I started on the Lexapro after a couple of months, mostly as a result of feeling so hopeless with my MD's care. I felt I wasn't being heard. He didn't want to check out whether or not I had the fistula before going ahead with the reversal. After seeing 2 other MD's who said they'd do testing first I decided to change MD's and things have been better since. It was definitely a roller coaster with the ileo. I was depressed. But the Lexapro really helped. I could sleep and eat again and I think it even helps at work. I'd check in with your therapist or MD to see if you could use an increase. I think people do get used to a certain dose and occasionally need an increase. Keep reminding yourself there's a light at the end of the tunnel and your not going it alone. I'm glad you have a nurse available to help out. That's a bonus!
ShellSue, No reversal yet. Having another go at a repair, vaginally. Hoping it's the last. Wish me luck!
Penny70

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hi, thank you for reminding us of that, my mom will live with us until i'm 100 percent cured, so right now my major concern is to find the right colorectal surgeon who can fix me.

i called the only colorectal surgeon i found in town, but the number is not valid any more. Good lord, i don't know what i should do from there.



and if you started to have bubble now, i think you'd better pay attention to lots of things:always eat selery, cause it helps you to have a smooth bowel movement; whenever you fart or having bowel movement, try to put one of your hand in front of the vagina and keep that area as airtight as you can, just so you can make sure that every bowel movement and every fart won't make the hole bigger. i used to only have bubbles, but then i paid so less attention to what i ate and fart as usual and when i was constipated i pushed too hard(i did all these like 3 months after child birth, the bubble thing appeared 1 month after child birth), and then one day it just got worse, and that's where i fould a little bit of poo at the wrong place. eeeerk! had i ever known of fistula i would choose c section regardless of how much my baby weights or whatever. being deprived of feeling normal, being deprived of having sex... it all sucks!





**edited by moderator**harsh language prohibited**

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yeeh, it's really hard to find a doctor who believes you, at first my fistula was very tiny, and no doctor believes me, now it gets worse.



in your case, i think you can ask the doctor to do a rectum ultrasound test to make sure like whether there is one and where it is. the thing is when it comes to medical insurance, it's hard to persuade the doc to do what you think is necessary and what they assume not necessary.



Good luck!

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hi, B,
thank you for encouraging me, and thank you for the Wendy Powell website. dealing with fistula is really depressive, and i don't think mine can heal on its own. eeerk, i'll see what the GYN will say about it on Jan. 21st, and then i'll go from there.

hi, Penny,
i'll keep you on my mind on 26th, wish you good luck!!!

hi, ShellSue,
nice to see you back here and nice to know that you are doing ok.


do you guys still have sex life? physically i don't know whether i can have or not, but mentally i really don't have any interests on sex cause i don't feel normal. and since my hubby is not a sex demanding person and he understands my phychological setbacks, so our marriage won't be affected by this damn thing that much. otherwise i really don't know how we can go on with my marriage life.

FISTULA SUCKS! HOW COME I DIDN'T KNOW A THING ABOUT IT BEFORE I GAVE BIRTH TO MY BABY GIRL! EEEEEERH!
i feel like that i'm cursed on by God.

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hi, B,

i forgot to ask you, you mentioned that your first surgery failed and resulted in a much larger hole, was the first surgery advancement flap in the colon?
now i'm scared by the ostomy thing, really scared. is ostomy a necessity for every advancement flap repair?

i think i'm like riding a roller coaster, sometimes i'm being very optimistic and sometimes i'm being very pessimistic. i thought i was out of the 'WHY ME' phase, but i'm not.

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Hi, B,

sorry, since i'm still thinking about whether i should just let it be or undergo a surgery, i would like to ask you one more thing, sorry. but i don't know whether i'm brave enough to take this risk, i mean, there is the possibility that it might get bigger, i don't think that i'm tough enough to handle it.

did you have 6 weeks bed rest after your first surgery? or your MD was to blame for the failure.

sorry that i'Ve been asking you too much.
thank you. B.

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