Recto-Vaginal Fistulas - Part 5

Thanks Penny!
I think my tear could have completely been avoided. The OB who delivered my baby wasn't who I had been going to because she doesn't work on the day I gave birth! Anyway she was sunnyside up and they never turned her, which I heard they typically do.

Your absolutely right! Having my little girl makes it so easy to forget about the RVF-she is a month now and is already growing before my eyes! Luckily my husband is really supportive as well!

It's funny you should mention MDs not diagnosing the RVF, I went back to the OB who delivered my baby and he said he didn't see anything and that what I might be seeing is lochia-like I wouldn't know if I was passing gas and having stool like discharge! Luckily it only bothers me with loose stools. I go back to my original OB on 8/10 and am hoping for some better answers. I think I am going to request a CRS right away and not let the OB/GYNs do anything!

Hope everyone is having a good day and enjoying the weather!

~Amanda

hi All,
Amanda I tried to reply to you but it didn't show up - I said much the same as Penny. I hope things work out for you. Let us know how you get on.

Flower and Penny,
Thank for your posts. I'm having a less good time now. I seem to have pulled the wound open (getting up from the sofa) and it is very sore and even with two antibiotics I'm getting some pus. the anus also feels sore for the first time. SO i am worrying like mad. I am seeing my GP tomorrow. Result is I can't sit up again. It's now 5 weeks since the operation. I just feel worried and powerless. Will it ever heal (I know it will eventually but).....

Sorry to complain but I just need to share with someone.

Flower - when you had the cut end colostomy how much mucus did you pass through the back passage and how often? Also I've heard it can smell bad too. I don't know if you've thought any more about surgery?

Hope everyone is OK. Beegirl I wonder about you and CJ and RLmom.

Bea xx

I have just discovered this post after 24 hours of HELL - Yesterday I just found out after giving birth to my son....I HAVE A FISTULA!! I have been having gas pass through my vagina and loose stool - I am a nurse and for 10 months thought I had loose vagina and thought the stool was just because the diarrhea got "everywhere" (I know you know what I'm talking about)

PLEASE EDUCATE ME!!!!!!!!!!!!!! WHAT DID YOU DO LEGALLY?! I must not have a large fistula because I do not pass formed stool - Anyone in my same boat?

Hi Everyone!

Thanks Bea....I hope things get better for you and you have some good movies and shows to watch while your cooped up! I remember getting so stir crazy the latter end of my pregnancy when I was too big to move!

I went to my follow up appt a few days ago and my OB couldn't feel anything, she assumed that it must be a pinsize hole d/t to my minimal symptoms. I usually pass some gas out of both areas and then after a BM have some discharge on a pad but then its over with within a half hour or so (still sucks and is frustrating though!)

She mentioned she saw some granulation tissue about the size of 2mm and put some silver nitrate on it? Can the granulation tissue be whats caused the fistula or is more of improper stitching? I was also send home with some estrogen cream to insert and a stict no sex with the hubby yet. She wants to see me back in a month and sounded like maybe it would heal itself?? I'm assuming she is just being hopeful though-I haven't heard of these healing by themselves.

To guest-I can relate. The mayo clinic website has some good information out there on the different types of surgeries and tests they may perform to diagnose your fistula.

Hope everyone is staying cool-it's crazy hot!
~Amanda

Hello Bea ! so sorry I am not checking this site more often,,,,been busy as heck.. To answer your question about the mucus....I had what I called the "Bowel Movement Mucus" I prolly passed it out once every 2-3 weeks, more if I tried on purpose....you have to remember, the muscles are still waiting for the "signal" to go potty and that's when the mucus comes out. It's almost like the "phantom Bm urge" that pateints have after they have their entire rectum removed and have the colotomy permanenty. Mine did not have an odor that I recall, I was too busy spazzing about the presence of it in the vag opening to notice. But was told by those much more educated and therefore smarter than me, that the RVF was healed.......mmm, bunch of c**p.
I go back to Cleveland Oct 8 so we shall see what Doc sees and says....the fact I am still passing some gas thru the vag is of some concern....hello.....been saying that for awhile now....Bea...can you roll off the couch rather than trying to stand straight up? Hey complain all you want, that is what we are all here for....I could go on for hours...ha ha I have to ask...where your fisula ended at, did it seem like it was coming out of the vag? To everone else...how are you? Penny, beegirl...doing ok? and to the new ones here... Amanda...how that estrogen cream working for you? make a difference? stay upbeat and in touch !
Flower

Hi Flower,
Don't worry - I've often been away from this site for a patch when I've been busy etc. I'm only so conscientious now because I am still on my convalescing sofa!

Since I posted I have passed some mucus - this first was brown and odd smelling but I think they use iodine around wound sites after an operation (I have often seen brown staining before) so my guess is that this is what that was. Then I had two lots of clear-ish stuff. I do get an intense urge as though I have diarrhea from time to time which I try to suppress instinctively. I am slightly concerned that the two times the mucus came out it was without any control from me. It just happened. I am hoping that if they do do the reversal I will get control again. I get a magazine from the Colostomy Association here in the UK and there people say the mucus can get to be foul smelling with cut end colostomies which is why I asked the question.

Since I 'tore' the wound I have been very careful getting up as you suggest - rolling off the sofa and bed and using my arms etc. Things are a lot better now and I am starting to walk more. Sitting is still and issue. Yesterday I looked at the wound for the first time. There is a small patch which is still open - bright red and moist - but around it it looks amazingly normal. I can see scar tissue but that isn't red. I didn't dare look before because I think you get your self more stressed in a way but I decided I had to start looking so I can tell if it is actually getting better. It is over 6 weeks since the op so I am very fed up it hasn't healed over. That said I can't tell if the repair has worked. Flower are you saying that you knew the repair hadn't worked even after the repair and while you still had the colostomy? (I know you were told it was OK but you are the expert in your body).

Re - where the fistual ended - the hole was visible from the outside next to the vagina - a separate hole - like where you pee from (but bigger) and at the other end near the perineum - when wiping it was like it was coming out of the vagina, but the gas sensations etc were not in the vagina. I have never heard of anyone having the fistula like this and I wonder if that has made it harder to heal because the tissue it ends in is that soft red tissue which doesn't have skin over it.

Flower - October seems a long time to wait but I guess it will pass quickly. I don't know what to say - only you can decide what you can accept and whether you can face more surgery. I sometimes wish I has never started with any surgery because of the damage it has caused - I can never go back to my body as it was. Did I mention before the australian lady who has written of her experiences and who had two colostomies and 12 operations? Wendy Powell - and the website she set up - RVF SUpport Network - which is the best patient information I could find before I found this site.

Amanda - I hope you are OK - granulation tissue is scar tissue and may indicate formation of a fistula or at least some damage - it won't cause the fistula but shows there has been some sort of damage. I had some when my fistula was fisrt formed in the tissue outside/around the vagina. I know silver is supposed to have healing properties so that maybe why they are trying the silver nitrate.

To everyone else - I hope you are OK. Sorry to bang on about my reovery experiences but it helps to type them out as you guys understand in a way that no one else can.

Bea

Hey Bea...good to hear from you, When I had the colostomy put in, my surgeon flushed the lower part of the colon out with whatever they use to remove any residual stool, and yes, it may be the iodine, betadine, and just some plain ole stool that was hanging out in the lower colon that is finally coming out, hence the brownish color....mine did have a slight brown color also a few times.

Yes, sad to say, I did suspect the rvf was not healed as 2 different doctors who checked me out 4 different times told me, I just wanted so bad to believe.....my bad for not listening to myself and going with MY intel....my body was telling me something and I chose to ignore it, won't happen again. My husband says maybe it's a different (new) rvf as it seems to be smaller and less of a problem as before the colostomy...maybe I WAS healing and didn't give it enough time....again, I was told it was healed.....Ques Cera cera....

Now that you have the colostomy, try to not let the colonic urges control you....I have aniexty and that would make my situation worse, and I used the colostomy to retrain my body and I kept real peppermint candy on hand to eat as peppermint calms aniexty, drank the tea too....Now I eat fiber pills,probitics, immodium to help me out when I need it the worse, I tend to have cramps alot whn I take these things so I try to take the least amt I need. I sure hope that you are now on the road to healing and I bet the location of yours is the reason it is taking it's time to heal....I am waiting for Oct as the students at the university should be all settled in and work will be less hectic and my husband will be back in the area working I hope by then....gives me time to research and think and pray.....
Everyone take care and hope your summer was a good one...Fall will happen soon enough, then winter..bbrrr
Flower

Hi Flower,
Many thanks for your reply - it really helps to hear of someone else's experience - especially as this particular op is new to me and as you know you are on the look out all the time for odd sensations which might indicate the repair hasn't worked. I am worried that they might rush into the reversal but also remember you saying that you can't have the cut end colostomy for too long.

Re you having a new fistula - that may well have happened. My original RVF seems to have healed with the repair they did at the same time as the loop colostomy. But it moved/re-formed lower down hence the need for the spinchter repair. I think the end of the old repair can cause a new hole - something like that - because I asked about how that had happened. They were a bit vague but did say it can be that the repair does that. How can our bodies be so contrary? I wonder about the healing time for a fistula too, as my bowel was swollen enough with the loop colostomy that it didn't pass anything for the first 3 months. Then as stuff did get through the fistula began to bleed and then stuff came through. So even after 3 months it hadn't closed. Who knows?

Anyway thanks again. I am still walking better but not sitting. I am hoping that some movement my help get blood etc to the wound and help healing, and assume that if I don't feel soreness it is OK.

Hope everyone else is OK. Penny, Bee girl, Amanda, CJ and RLWmom .... and the others .. Teya etc too many to mention, sadly.

Bea
xx

Hello Everyone

Hope everyone is enjoying the last few weeks of summer!

I have no new news but obviously am thinking about symptoms and possible surgery at least once a day!

I was wondering if you guys would share with me how your recovery process was after your first RVF repair and what type of surgery you had?

Thanks!

~Amanda

Hi everyone

Not been on here for while, wondering how you all are.

I'm living with the fistula, think it's getting bigger, more is definately coming through, but I still don't want to do anything about it until Georgie is older, can't imagine how a colostomy would hold out the way he kicks me in the tummy (9 months from the inside, now he's kicking from the outside ...).

Hope all is well

Teya
x

Hello Bea.....and everyone out there still on the site
Been awhile and lots going on I am sure...How are you? have things improved at all for you? I am at the crossroads I have been dreading now for 8 months only with a twist.....My small bowel is now obstructed at the old resection site from 20 years ago and was in hospital for that and I need a resection, no surprise there..but here is the kicker, I can have the resection, a temp ileostomy and another flap repair for the rvf all at the same time out in Cleveland.....Is that wise to have all that done at once? I know I tolerated and had no problems with the temp colostomy I had a year ago, but what is an ileo one like? IS it harder to take care of? where is it located on tummy? So many questions I guess, I feel like I am a walking time bomb with this obstruction,that I am scared to eat much. My crohns is back and has been slowly and sneaky on coming back which would explain also why the rvf did not heal as active crohns has a tendency to prevent any healing with the body be it cuts, bruises or surgeries....So is the third time to attempt this repair the charm? I have to have the resection so should I go ahead w the ileo and do another repair or will it add to the scar tissue and make an even bigger rvf...? Like I said so many questions......I am really just thinking out loud here, not looking for some one to tell me what to do as no one can, but I know this site is great for listeners.....Penny, is everythng ok with you too? everyone who is on this site, I wish you all the best and stay strong.....Flower

Hi Flower,
So sorry you now have more to deal with. Good Grief. Life isn't fair. I haven't checked in here for a while. I thought the thread had ended. I am doing fairly well. Same as you I take probiotics, imodium and fiber pills and try to empty every a.m. and not go again til the next a.m. If I were you I'd be tempted to get everything done at once just for the convenience of it. Cleveland is supposed to be super in the surgery department. Have you gone there before? Crohns makes everything more complicated, like you said. I had an ileo for my RVF and I'd say it's a bit more cumbersome as you have to empty it out more often being higher in the system and therefore more liquidy. That might already have been the case for you but I just remember having to empty it fairly often (? 6 times a day?) depending and running to the jon in the am after sleep when it blew up like a balloon. It's higher but they can place it so it's more or less convenient, not at the waist. Let me know what you decide. I'll be thinking of you. Penny

Hey Penny....Good to hear from you...I am not permitted to take the fiber pills and stuff right now due to the blockage, but the steriods are holding me so I can eat pretty much what I want, just not as much I guess....I have 2 appts in CLe with two different docs, and yes that is where I had the last two RVF repair attempts done....My stoma however was done here at my home town hospital...and the take down as well. The longer I hold off the surgeries, to let the Crohns settle down the easier the surgeries will be and I am thinking too to have all done at once, it's justa little scary as Cleveland is 3 hours away at best if anything should go wrong....but my local doc says he is here for me as he always has been !! And things are nuts at work right now as there is staff changes and I may have an opportunity to go full time which is what I want....bad timing I guess, my boss is great and understands so I hope it won't be a problem and all have patience....always some thing.
I too thought this thread died out which is why I would like e mails so we can allstay in touch w/o this thread if need be. Back to the ileo...I think I can handle it, my colostomy was needing emptied 5-6 times a day so I guess this will some what similiar...? I worry more about leakage with the ileo due to more liquid, but just have to be on constant guard and always prepared...right? Yours was a loop one? That is what the thinking here is to do...to preserve the back side blood vessels there, doc finally explained the reasoning why...
Everyone (anyone) else out there? doing ok> Bea....????
flower

Guys,
I've been trying to post for weeks - everytiime I do I get an error message. It's so frustrating seeing your posts and not being abole to say anything.

I'm going to post this to see if it works - and then i'll update you

Bea xxx

Hi all,

Especially Flower, Penny, Amanda and Teya.

Amanda - I feel terrible. I tried to reply to your question which sat for ages unanswered and I couldn't get thsi site to work. I've tried different browers and even a new login. (I also opened a new topic just in case you guys saw it) I think Flower answered you - but 2 -3 weeks recovery for a vaginal flap repair which is what you are likely to have. That op is OK as ong as there are no complications. The issue will be if it works - but really worth trying.

Teya - Glad to hear from you. I can understand waiting to have any surgery. Hang in there girl and enjoy the little one.

Flower/Penny - Just over a month ago I developed a perineal abcess all around the wound and had to be re-admitted to have an operation to drain it. I am still on two antibiotics and the abcess/swelling is still there on and off. It's been nearly 3 months and I still can't sit for any period - I can only work from home. And who know if it has worked? With all that swelling etc .. and I am so weary of it all. I think it is getting a little better now just hope the progress continues.

Flower - i am really sorry to hear your news. big hugs. I would say the same as Penny - do it all at once if you can bear it - and I haven't had an ileostomy so Penny's advice will be the best.

I am going to there noa and see if this posts.

And yes - if only we could give email addys as this posting nonsense is a mare - or are you on facebook? Could we set up a group there?

let me know

Bea
xx