Recto-Vaginal Fistulas - Part 5

Hey Ladies,

I am having a rough time. I started to have some vaginal bleeding yesterday and again this morning. In my last post I mentioned that I was passing gas but no stool since my surgery. Well, this morning after seeing the blood again... I got worked up about it and it made me get diarhea. At first I didn't pass any stool. Then I had to go again and then I did pass stool. Not a lot but a little. This of course really upset me and I think I even saw stitches in the stool.

I called the doctor to let him know. He said loose stools like that are going to make things worse. I just can't help it. That's the way I am... when I get upset, I get sick to my stomach.

So, he talked to me about a colostomy. : ( I go see him Tuesday and we will talk more about it.

Beegirl- Did you get your colostomy before you had your tranvaginal repair... or did you get it when they did the repair. My doctor made it sound like I would get it.. have it awhile and then get another repair. Then I guess I would have to keep the colostomy for awhile longer.

Oh gosh... I never wanted it to come to this. I don't know what to think.

To all of you that have your stool diverted... how do you cope??? Is it easy to manage?

What if I get the colostomy and another repair and everything still fails??? I don't want to go through all of this if it's not going to work.

I am so sorry to ask so many questions. It's just I have no one to talk to. I wish I could call one of you on the phone and talk, but I don't think we can post emails or phone numbers on here.

~CJ

Hi all
Wow, so I don't want to get my hopes up or anything, but I have just gone through an entire day without pooping through my lady parts. There is still gas passing through, but I had a good healthy poo this morning and nothing crossed the threshold into my vagina. I was so afraid to jinx myself that I didn't say anything to my husband about it for the better part of the day, but then I realized that no verbalization of what was going on was going to change my physical state. I hope hope hope hope hope that this is a sign of things to come and that maybe, just MAYBE, the b****r is closing up. Please cross your fingers for me!!!

Quick question - were any of you breastfeeding prior to your surgeries? I am still breastfeeding, but have recently (i.e. the past two weeks) been applying Estrace, a topical estrogen cream, to the outer portion of my vagina in order to help the vaginal tissue "beef up". Did anyone else do this?

I hope you are all having a good weekend. We had glorious weather in Maryland today that let me hang outside with my baby without feeling like I needed a shower afterward - very unusual for July.

Take care,
RLWmom

Flower- I felt the same way...it is easier to deal with. I am thinking of you and if i can add any insight ask away...I have the ileo. but some things are similar.... I am sure.

CJ-yes, I did have fecal matter come through.... I have heard other women say that they have had incidents like this, but over time it healed, but most of them had ostomies. I hope you are well.

Hey Bea and Penny....

RLW-sorry to hear things haven't panned out....

Have a good weekend ladies. I am trying to clean my house, ha... B

Hi Flower,
Good to hear from you. It seems that you have teething troubles with the supplies but I am sure they will still get sorted. I've ended up with a range of types of pouch as a result of trying a few different types which I am keeping hold of in case I run short (has happened once). I am not sure if you have the drainable bags at the mo? These can be good at first as you can 'burp' them. They are also invaluable if you get diarrea - fortunate;ly this hasn't happening to me yet but you never know. You might find a closed pouch better once you get going.

I think that having the closed end colostomy must surely help with the healing? It makes sense to me. Hopefully you will be sorted soon.

One thing to consider (and I don't want to add a negative note) is that my surgeon said to me that a fistual can re-appear after the reversal - even if it seems to have healed. I have no idea when/why that happens. I personally would say better to wait a couple of months longer with the stoma, however quickly they say it is 'healed', just to be on the safe side. Sometimes slower can be fasetr in the long run. Maybe talk about that with your surgeon (and I'd like to know what they say out of interest) - but we are jumping ahead here . For now just look after your self and concentrate on recovering from the op. You have made a big step towards getting it fixed - so that is great news.
Keep posting.

Penny and B - hope you are OK? B hope you aren't too anxious about your op?
Bea

Hi Bea.....yea I'm using the drainable bags as I have always had and will always have runny stools, on a good day I can maybe make them mushy...so I am draining the bags 5 times a day easy. It's not that hard or bothersome, I can't tolerate the weight right now pulling downwards from the stoma and surgical site. I am hoping that after a few weeks my own tummy muscles will be able to help me out. I am a very thin person, always have been so any air that gets in there really makes itself quite evident.....
I changed out the whole system yesterday, wasn't too difficult, and judging from the looks of the wafer I may be able to get in one more day in between changes....

My husband agrees with you, when the time comes to try and repair these fistulas, I should hang out with Stella Stoma a few more months to be sure.....so I figure we are talking a year here....I can do it, sure beats the alternate.....fistulas do not hurt anymore,I can still feel the one but it does not ache like it was.....i have to agree, slower is better in the long run, but as a society we are used to instant gratification and results.....

Penny, did you have an ileo or colosto? Did you require additional RVF repairs or did they heal on their own?
B....Aug 5 huh? will be wanting and waiting to hear how things go and of course praying..............
Flower

CJ-I posted a note, but it has yet to come up...so yes, I did have stool leaking through.... and hopefully it mended, we shall see. fingers crossed.

Flower-thank you...you sound great!!!!!!!!!!!That is so awesome....you can live a normal life with an ostomy...anyway, good for you!


Bea and Penny-be good. b

cj-i saw your post now...ugh...okay, I have an ileo. and my life is fine...I am active, work, off for the summer, but do work, have a to-be two year old, am active outside with my garden....so life can go on as usual. really, it can. and does.

i had one failed repair then the ostomy then another repair...i will know if it was successful in aug. as i did have some fecal matter go through in the beginning....so, i will find out soon.

there are no guarantees, so don't let anyone fool you. i believe this is the best route (but nothing is certain) but i have a great husband and good support system--here helps too. as not many peopel really understand.

You will be fine.... it is just an a bump in the road....B

Beegirl,

I go to the doctor tomorrow so I will let you all know what we decide.

Did you get your second repair done the same time you got your ileo?

Do people at work know about your ileo? If I get one should I let my principal know? I am so embarassed. : (

Does it take a long time to figure out how to use the ileo? I am worried I won't be able to take care of it.

Is it expensive to buy the bags and all??? I wonder if insurance pays for all of this?

Ok, thanks to all your help!

~CJ

CJ Being really new to the colostomy...1 week almost, it's not really the end of the world, I hated having to spend time and lots of time in bathroom cleaning out the RVF and dealing with not knowing when something was gonna go thru it.....This IS different but I am keeping positive, I too deal with bouts of diarrhea which is why those fistula repair attepmts never stood a chance to even think about healing what with all that bacterium present...

Emptying the bag is fairly easy and I don't give a rats butt what anyone thinks when they see me and figure out I have a bag......you can't really tell and I'm told as the swelling goes down it'll be less and less noticable....I am alive and am excited about going back to work soon.

I met my huge deductable for 2009 so my insurance pays 100% of the supplies....different story Jan 1 2010.
my goals are simple, try another repair by Dec.....wait and if it heals, then do a reversal by May 2010. Everything depends on the healing of the fistulas....looking into maybe a gyno surgeon to do a vag approach vs. rectal, looking into different hospitals, so I will be researching this alot. And of course keeping positive and talking with everyone on this site for encouragement......

Good luck and really think things thru...these things are not an easy fix....as I found out, but you are not alone and a weirdo !!

flower

Ladies,

How often do you have to change your ileo/colst. bags??? I am trying to figure out how I would do this at work. I am a teacher.

CJ

CJ- I do not think that you have to tell anyone or be embarassed...I am a teacher; I did tell my co-worker (I co-teach) who is a good friend, so she understands if i have to run to the BR, but you could. just tell someone you trust, so if there is an emergency. It is so doable-more doable than the rvf. My insurance (thank goodness) are covered in full, thank goodness. They are expensive!!!!! Check with your carrier.

The colostomy may be easier to manage during the day-the ileo constantly runs, which is tough....but no one notices...seriously...unless you say something. You get so use to it...I remember the first day I had issues with changing the appliance, I had a bad stoma nurse at first, who told me to use the wrong stuff, i cried and cried....but now it is just like whatever...

my husband said something to me that really helped-so what he said, everyone goes to the br, what's the big deal.

you will be fine no matter what.

also yes i had the 2nd repair done when i had the ileo done. b

Flower and Beegirl,

Ok, so I have to go back to work 8/17..... if my doctor decides tomorrow for me to have a ileo/colost. and I went in this week or next to have it done....do you think I would be able to go back to work by 8/17? Do you have a long recovery for this?

Once you have the ileo/colst. do you get gas??? does it leave your rectum? I am sorry to ask these questions I just don't understand and want to be educated.

My fistula is so small.... I don't believe my surgery made it worse. I only pass stool with diarhea. So, I don't even know if I should go through all of this or not. What if I go through all of this... get another repair and it's still not fixed? : (

Beegirl- did you tell your principal about all of this?

CJ

Dear all,
Hope you are OK.

To CJ and RLWMOm I am finding this site weird - last time I logged on there were just posts between me adn FLower adn now it seems a whole other conversation is going on too - please don't feel I have been ignoring you - the posts show up in such a weird order??

We seem to muddle through OK but please forgive the randomness of some of it - I wonder if they are checking what we write and certain words hold things up?

Anyway, Flower you sound like you are doing good. Just try and stay positive because this is the way forward for you and all the evidence is that the stoma works.

CJ - that doesn't sound long enough - but you maybe younger than me (41) and cope better. I took 4 weeks off and still felt like a pale sheet when I went back to work after the stoma. I'd say 4 weeks because of the getting used to the stoma. With the colostomy it was noisy as well. While the op is not that bad you have swelling and also as I think FLower mentioned the weight of the bag as it fills is u comfortable when the site is swollen and I found it pulled as I walked - all long gone now.

I have found I get a little gas through the fistula even with the stoma but mostly not - it is dealt with by the filter in the bag and even when that gives up the bag inflates like a ballon rather than pass down to the rectum. I change my bag (with a colostomy) 2 times a day. I can't pretend there have never been awkward moments - mainly to do with the bag blowing up like a ballon and feeling it must be so obvious. I change the bag more often if I need to make sure I avoid those moments, such as If I have meetings all day. I guess you would just change in break times. You will learn your body's routine too.

In terms of the repair - I had the stoma and repair and it hasn't worked. I have my fourth repair next month (second with the stoma). I do despair sometimes but what choice do we have? my fistula was bad enought that I really couldn't face living with it. There is no asnwer to that question other than most people do seem to get there in the end. Sorry - not very positive but I can only say how it is for me.
Hope this helps,
Bea

Bea,

How did you get your fistula? What kind of repairs have you had? What repair is next for you?


CJ

CJ- No, I didn't tell him...I didn't feel like he needed to know... I talked to the nurse, in case of an emergency...but I don't feel like you have to tell anyone, it does not change your work performance at all!

recvovery time for the ostomy and repair- i was back to work in two weeks. But EVERYONE IS DIFFERENT!

Be good, B