Couldn't find what you looking for?

TRY OUR SEARCH!

Pergamom- OH, I am very, very sorry that you are going through this, but you are far from alone and even though it is devestating it is NOT the end of the road, by any means... Jesus, everyone poops, unfortunately we just have some plumbing problems now!!!

I have had an RVF for 15 mos. since the birth of my daughter.... It has been very tough, emotionally draining...but it has made me stronger. The first thing that really helped me when I felt desperate was getting on an anti-depressant (I use Lexapro) I never wanted to use it before, but after dealing with the heart ache of this, it helped....

Secondly, everyone is different and everyone heals differently and can deal with different things better.


Thirdly, I had my first rvf flap repair in April of last year.... during the 8 mos. i waited my fistula did get smaller--the surgery did make my fistula much, much bigger...this does not mean it will happen to you!!! But waiting to see what happens is something I think is smart to do- DO NOT RUSH INTO ANYTHING! surgery in that area has no guarantees and can be tough, especially with a new baby.

Fourth-talk to many DRs. colorectal are best. RESEARCH.

Fifth-get support, internet, women groups, friends, etc.... You are not alone!!! It is ok to feel any way you do..this is difficult...when your body fails you... do not read all this stuff and think worse case scenerio....everyone is different....

It is a waiting game....and it is hard, but you can do this!!!!!!! Ask anything, someone will answer!

PENNY- went to dr's nurse...she said it wasn't necessarily a failure--that other women have had leakage like mine and over time the surgery still took...she did not look around because she did want to bother the area...but that made me feel a bit better.... I have not had any issues since...but obviously am still nervous..thought that may help you since you may get the same thing done. I will keep you posted.... hey what signs do you notice before your bag is gonna go??? just asking...and what appliance do you use? I am using convetec now-two piece with charcoal filter and just have some ?'s....Hope you are well!!! I feel a bit better today... I go back to work on Monday, so I am getting mentally prepared. I hope you have an awesome New Year!!!!!!!!!!!!!!!!!! B

Loading...

hi, B,
thank you, somebody recommend me a good gyn, and it takes for ever to get an app with her, although i called her months ago, the next available app i can get is in late Janurary.

i searched online, and it says that RVF is mostly common in developing countries, ironically i'm from a developing country, but since my husband is an american so i had our baby delivered in the states. unluckily i encountered a very bad gyn and a very irresponsible nurse. none of my girlfriends who have their babies delivered in my home country have even heard of RVF let alone suffer from it. oh well, i guess i'm just destined to go through all these.

fingers crossed for you and us all.

Loading...

Happy New Year everyone, I'm hoping this is a good one for all of us.
Pergamom, I agree with B. It's a lousy thing to have to deal with but it's temporary and you're not alone. I think people have been 'cured' and then leave the site and get on with their lives. For some people it's straightforward and things get better fairly quickly. For others, like me, it takes a while and there are complications but I feel we're all heading for the same goal and will get there eventually. Your baby is probably keeping your busy and that is a good thing. Going back to work really helped me in that I could lead my normal life while still dealing.

B, Yes keep us posted. That sounded like some hopeful news. I wear a one piece Convatec. I actually asked for a two piece sample just like what you have but have never gotten around to trying it. The only problem with the one piece is that you do wake in the early hours with a balloon attached to your stomach! The website I'd recommend is www.uoaa.org/forum. It's really helpful, lots of experienced people to answer questions. Oh, and I change every 4 to 5 days. That seems to work for me. Other people use them for shorter or longer periods. And I am on Lexapro, too. I think it's been very helpful though for me I think it makes me prone to migraines but so far not too bad. Just thinking about my surgery on the 26th can be depressing so I'm trying to get my supports in place. It is good to hear your positive attitude. We all need it! Penny

Loading...

Pergamom-Again, if there is anything...let us know. I find my humor the best armor...Make sure you see a colorectal surgeon too!!! Before going ahead with any procedure and ask, ask,ask, ask ?'s...make sure the surgeon has done many procedures. Ask about success rates, everything, please.... and again wait a little and see if it heals to point that is comfortable. Also remember after pregnancy/birth your hormones are whacky (mine were) that can make you feel blue, as well... It is tough and there are days I want to scream...and I do...whatever...we are allowed to...it is all ok....

Penny- You'll be fine... the surgery for the layered approach doesn't hurt, at least for me...stoma surgery was so much more painful! Mine is icky and I have split skin, etc..trying to heal it with the help of my et nurse. Lexapro is my savior....ha. that and keeping busy, like you said. Are you east or west coast...I am east. I am very glad I found you and this site...I hate that you are going through this too, but atleast it is nice to have connections.... Happy New year to you... I use the charcoal one, too....which is good for releasing air, but I just learned you have to cover the charcoal when showering--I noticed a yucky odor and I think that was why--I did not cover it...duh, on my part. What can you do? Anyway, please keep writing too...I will let you know all that I am dealing with etc... I don't go back to the Dr. for awhile...so I am just thinking positive... Be well, b

Loading...

thank you Penny, i'm a bit positive now, althouth this morning i offically found some poo in my vagina, i was freaked out, but now i'm being just ok.

i'm afraid that since now i have poo there do i need to get some antibiotics prescribed? just as precaution?
i'll try get an app with a colorectal surgeon next week, hopefully he can prescribe me some.

when can one be sure that this fistula sh*t has been fixed? like if you don't have any air or poo out of your vagina for 6 weeks after the surgery?

Penny, wish you good luck on 26th.

Loading...

oh and Penny-do you use eakins? or glue? Just wondering. The charcoal escape releases tons of gas, which is good. I use Eakins. I am now averging 2-3 days, which is good. My last appliance stayed on 3 days without any leaks, so I am very happy about that... I tried that site and signed on, ......thanks. I did have a little more leakage today, sadly...but again, I will keep you posted. B

Loading...

Hi Pergamom,
I'm sorry to hear your RVF appears to be "official". I haven't heard of anyone using antibiodics but I'd wait and see what your colo rectal MD says. She/he may be able to answer a lot of your questions. I'm glad you don't have to wait a long time for that appointment.

I think RVF's might be caused by a poor MD but I think they can happen anytime. They're a risk for people with colon problems and all kinds of surgeries. Mine was from a sphincter surgery. I think the important thing is finding an MD who'll fix it, finding one who's had many successes and experience in fixing them. Someone who'll listen to you and understand what you're going through.
Thanks for the luck. I'm hoping my surgeon's luck at successfully treating these holds up too!
Penny

Loading...

Hi Ladies,
I had my first surgery Nov 22nd, a month after I had my son. And Pegamom - I too have had horrendous thoughts and still do just from being miserable from being so not normal. I keep thinking I will never feel like a woman again. SO my outcome is ok...there are not bowel movements any longer coming from the wrong area, but I just recently started to feel a tad of gas passing through. Small bubbles, so it must be a pinhole size hole. I can't stress enough how important it is to ENSURE you do not lift a thing after surgery. I started to lift my son 2 weeks ago after my mother in law had to leave. I didn't have a choice. By the end of the first day i had a lot of pain down there and light bleeding and here I am feeling bubbles.
Hard to read so many unsuccessful posts. But I am TRYING to keep positive. If i have to live w/ a tiny bit of gas, fine. I wouldn't have said this a month ago when I was crying daily over this. My problem now is that I have a lot of pain down there because the dr that fixed the fistula repaired one of my original tears that were still there from birth in Oct. I had 4th degree tears and then some. It was horrendous. We'll see.
I wish you luck, be positive and when they say DO NOT LIFT for 6 weeks, don't!! =)
Hang in there.

Loading...

hey, i think i finally entered in correctly, so my posts get posted and don't have to wait.... just wanted to say hello to everyone...and Penny I think I may go without the charcoal filter-(they leak a yucky scent) how is tyhe balloon effect? My ileo. is poorly placed to the right of my belly button...a bit to high...b

Loading...

Penny,

I would love to go longer with my appliance....did you start off with less days then increase. I would be happy with a strong 3...today I got two--I was home when I noticed it leaking through the side.... I use the eakin and the two piece. like I said. ANy suggestions. B

Loading...

Hi B

You really shouldn't have any leakage. I think it's a sign you may have the wrong kind of appliance for you. I used a regular Convatec until I began leaking and then I had to switch to a concave model that worked much better. I would check with your wound care nurse on that one. I used to try to go 7 days with it but then i found out if there is any leakage it would have a chance to fester and irritate my skin without my knowing. So now I mostly due 4 or 5 if it's more convenient. I like being able to shower the area more often and I think it keeps the area healthier. Good luck with yours. I think it does take a while, sometimes, to figure out what's best for you and sometimes over time your needs change.
Hmm. I 'm not sure I'll be having the same surgery as you. I would LOVE to have no pain but my MD has already warned me there'd be LOTS of pain "down there", he said. So I'm gearing up for that which I proably shouldn't be as there is nothing I can do about it ahead of time. I use Delaudid for pain which is strong but works much better than other meds for me. How long was your recovery for? I'm anticipating a month at least. My stoma surgery was actually not bad. I had a lab medical person tell me that when I coughed I'd have the worst pain imaginable with this type of wound. I think she had issues, spreading fear where she could! But I did heal well. My opening is off center which sometimes causes irritations to the skin but that's about it. I go on the 13th for a preop visit. If I find out anything more I'll let you know!
Penny

Loading...

Penny,

I am gonna call my ET nurse...and ask about other appliances, i really believe the placement is an issue...

probably no lifting for 6 weeks, as the others.... my first repair was a flap (rectal) and it hurt more than this one.....

Hey Penny will they check again to see if your fistula may have healed over time? Just wondering.

Tomorrow is my first day back at work, wish me luck!

B

Loading...

hi, Penny,

how can one find the trustable rectal surgeon with high success rate in town? are there any website we can use? i live in a small city, i was wondering whether i should go have it fixed in a bigger city?

i'm also surprised to know that no one uses antibiotics. i mean, there is poo in the vagina, so most probably it might cause infection.

wish 2009 will be a new start for everyone!

Loading...

Hey Pergamom-

I didn't have any problems with infections down there, even when my fistula was really big without the ostomy...I learned how that area of my body was pretty strong and I didn't have a huge amount of infections... strange. But everyone is unique.

I found my colo-rectal surgeon (first one) from asking a friend...and the second from a woman, who had a fistula.... I traveled about an hour for both my surgeries because I wanted to have reputable Drs. Do you live around a good hospital??? I would start searching their, your insurance can help give you Dr., you can ask for a referal from a trusted physican, just some ideas..I googled my Dr. and found out he was voted one of the best in the area...

I believe there are websites, maybe Penny will know. I hope it is ok that I replied....

Best, B...I am trying to sign in the right way, instead of under guest, but I keep messing up...ha

Loading...

B
Good luck on your first day back to work. How long have you been out? Did you have to be on bed rest, too? I think because mine might include another sphincteroplasty, the Md wanted to give me the worst case scenerio just in case. Which I guess I appreciate. But it's good to know there's a chance pain and recovery might be less than expected. I've waited so long I almost don't want to imagine this will work and then the reversal will follow and be successful, too. I would be thrilled if I were back to 'normal' by summer. OH, I use paste, powder and spray for the pouch. It took me a while to get used to it all. I don't think I sat down on the toilet for 6 months and then decided it was hurting my back to bend over. Using Public restrooms was another step. The odor was another issue. I started out using candles, then a spray that didn't work, then something called m9 and now I've tried tictacs. It's definitely a learning experience.
Pergamom,
I am no expert but talking to your primary care physician is a place to start. Your ob/gyn might also know someone. At your first visits you can ask, how many of these have you done successfully, etc. Every state has a large hospital or clinic that might have more experienced people. I went to Boston for a consult but as actually have this surgery done by someone closer to my town. Good luck with your search!
Does anyone else have any suggestions? Any success stories to keep us going?
Penny

Loading...