Ladies

[Misty-Eyed]

I'm curious as to those of you that have recto-vaginal fistula.

I've had mine for about 10 years now and it's not really posed that many problems. Just really embarrassing lack of control with passing air. I've just got used to the idea that it's here to stay.

Now though I think it's getting a little worse. No infections or anything but a little leakage. I don't really want it to get worse. Intimacy problems are bad enough as it is with Crohn's and I'm going to end up as a nun at this rate.

Have any of you had any luck with medication that's help or has anyone ever had any that have healed?

I know it's a intimate problem but I would really appreciate any info that may help

 

[Cookie]

Hi Misty,

Yep. A recurring problem for me. The worst part of my Crohn's for sure. I had what was referred to as a complex fistula because it branched off into an abscess (like a tree). It would drain with the help of antibiotics, but even when the abscess was down, there was the problem of the stool drainage (esp with loose stools). Intimacy was a BIG problem for me, physically, but mostly psychologically.

Remicade is supposed to be very good for healing fistulas, but it did not work for me. I have had surgery twice, what is called an flap advancement repair where they go into the rectum and put a healthy piece of tissue over the opening. The surgery is outpatient and not too, too bad. Painful recovery for 2-3 weeks. I had my second surgery in October after the first one failed (had that in Aug of 06, fistula returned lass than a year later). This one seems to be doing ok so far, but there are indications that I may be on my way to getting another. I definitely think the surgery is worth looking into if Remi doesn't work. Have you tried Remicade?

I hope this gets better for you. Let me know if you have any questions I can help you with. I have dealt with this for about 8 years.

 

[Misty-Eyed]

Thanks Shady.

Yeah mine isn't bad enough that I've had an abscess or anything but I don't want it to get that bad.

I have been on remicade before. I had one infusion in my teens when it first came out and then I had 3 infusions a couple of years ago when they found my strictures. I had bad reactions to it from having it before and it only worked for a couple of weeks before I was back to normal. Plus I got told it could cause scarring tissue on my strictures and make them worse!

Thanks so much for the support.

 

[My Butt Hurts]

Mine only acts up when I am flaring, I rarely notice it otherwise. My gyno said the same thing about the flap repair, but I am scared to have anything done in that particular area, if you know what I mean - so I just leave it.
Right now I am on Remicade, and my perianal fistula is dormant right now too. I believe Humira is supposed to be good for fistulas as well.

 

[Lydia]

I have a fistula that has almost gone right through to my vagina. How do you know if it has gone through completely. Is it really apperant?

I am starting remicade soon in hopes of closing it up before it goes through.

 

[Sue-2009]

Ohhhh Ladies! This disease stinks! I am sorry you have to go through this...You are going through one of my fears. I have some aching pains in my rectum and sometimes my vagina...It scares me..Sorry to hear they haven't healed for you guys. I'm fairly new to this disease...is that pretty normal? Sue

 

[Lydia]

Not everyone with crohns get fistulas but when you do get them, they can occur in the vagina. They also recommend if you do get pregnant and have a history of fistulas that you have a c-section because if you tear you may develop a large anal-vaginal fistula that is very difficult to heal. I had a c-section because of this very reason. I cant remember the stats on fistulas and CD. Ever since they told me about the one that I almost have I have been very nervous about being intimate with my husband and I have been putting it off for awhile now. My poor hubby.

 

[Astra]

Hi girls
hope you're all ok?
sorry boys, but a bit of TMI here
After my hysterectomy 8 years ago, they damaged my bladder, apparantly all our bits are behind the bowels and bladder, so they have to take that lot out first! urgh
A week later I pooped thro my vagina! Oh God, it was the most frightening experience of my life!
Back in hospital, they did a cystoscopy and repaired it, they told me there was a hole somewhere? WTF? How? Anyway that was the gynae guys.
I was too scared to go the toilet for a week!
Anyway, I'm not convinced, cos 3 years later I got a dx for Crohns, and the gasto guys said it was a fistula, and it might come back!
So, to this day, I don't know what happened or why? or how?
And one of the main reasons why I'm considering Remicade. prevention.
xxxx

 

[Misty-Eyed]

I just seem to have uncontrollable wind passing through it at the moment which is hugely embarrassing, especially as it smells really bad! Sometimes I can hold it in when I'm sitting down but when I stand up it wants to come out.

It makes social situations very awkward and I get paranoid that people can smell them when they come out. Or even worse that one day I'll stand up and it'll be loud and smelly and it'll be awful!

 

[phillycrohns]

Misty:

I am so sorry that you are going through this. I have not had a fistula and wish I had some advice for you. So I will have to settle for lending you my support and best wishes for healing and recovery.

Chris

 

[Sue-2009]

Mysty EYed...Ohhh (((hug)))) this is not a good disease for "ladies" to have--actually anyone...So, for the ladies who do get them...can you be...intimate...with your mate? or is it to painful or what? Sorry if its to much to ask...Sue--

 

[Misty-Eyed]

Thanks Chris.

No Sue, mine isn't painful at all. I've had mine since I was 17 and now I'm 26 and I've not had a problem with sex. I find it's more just general embarrassment that a guy might go off me because they find it too gross. I've never actually told anyone about it though, ever.

 

[Astra]

Yeah but Misty
No-one will know where that smell has come from will they?
big hug your way
xx

 

[Misty-Eyed]

They will if I'm standing right next to them and there's no one else around.

It's mainly work situations as well where it worries me. If they didn't smell it wouldn't worry me nearly as much because then no one really would know.

Thanks though, Joan. It's nice to talk to people that understand.

 

[Astra]

Sorry Misty
I meant where, as in what area? know what I mean, it can pass as a fart, if it gets smelled, and we all do that, don't we?
no need to declare where it came from, who would know,
Please don't worry about this, and can I just say something hun, if you were with a man, and it happened, he probably wouldn't bat an eyelid, they're not very observant in the throes of passion! Only concentrating on one thing, the one that they think with lol
take care
xxxx

 

[danman]

Believe me, I understand what your going through, even though I'm one of those male types.....!!!!! ;-)

I had fistulas going through my scrotum.
The pain was unbelievable at the time.

I can totally understand your pain.
I felt, at times, that the farts would blow up my scrotum like a balloon at times.

It's not a pleasent experience.

 

[Astra]

Aw Dan

Sorry, I was generalising, tarrin with the same brush!! :lol:

Yes it must be just as bad in the ball park as it is in the playground!

xxxx

 

[Sue-2009]

Danman--thanks for piping in! Crohns just stinks! No matter how it shows up...No one should have this...NO ONE...I can't believe they don't have better meds for us...Sue