Recto-Vaginal Fistulas - Part 5

Hi All - and welcome rlwmom,
I have had trouble posting recently - last post took two days to appear so apols if I've seemed quiet.

I haven't much to add to recent questions as I've not had a sphincteroplasty. I hope you get some answers soon rlw and I'm glad you've had some improvement with your first op.

As I approach my bext repair I am wondering what post operative advice you guys were given as I am concerned that I am rather 'left' to get on with it. Any suggestions welcome. (re movement, walking, bathing, any pills other than antibiotics etc.

It's been a good weekend here in the UK and I hope that you guys have also had a good time.
Bea

Hi Everyone,
Bea, I had trouble with posting too and then figured out I needed to Login before posting or it would take days to post. It's hard to do because once I do that I can't find the site again. Very confusting. I've forgotten what kind of repair this will be vaginal or rectal? My last go at a repair was fairly easy, felt better in 24 hours, that was the rectal flap that didn't hold. Some people have splasty's to fix fistulas but it doesn't sound like that's happening. The only thing I can think of to recommend is good drugs which for me was Delaudid a fairly strong narcotic. But for 24 hours it was no big deal taking a strong med.
It's pretty much rained here all weekend. I think a small am't of sun might be coming through the clouds now.
Welcome RLWmom, glad you made it to this site. The flap is done through your rectum if it's the typical flap. There's another version of layering MD's do through the vagina. I think compared to the splasty it's a lot less time for recovery. b on this site had a fistula repair that had some stool coming through and that was okay. She healed more as time went on.
Thinking of you, too, b. I wonder if a visualization of a healed fistula will encourage your body to be well and ready for the reversal when the time comes. I found it hard to believe mine had healed, too. You deal with it for so long and you're so hopeful each time that it's gone you hate to go there again. We're all hoping this is your very last surgery.
Have good days,
Penny

hey ladies,

I hope you are all well. I am on summer vacation-yeah... my surgery got moved up a few days, so it is in the beginning of august, which is fine. I will visualize anything, Penny, if it will help heal me. ha.

Penny, can you tell me about the reversal-the actual surgery? what to expect, B

I am on vacation, too. At my daughter's in CA. Had a great day yesterday with beach walking, shopping, eating out and hiking all in the same day! I'm reading Twilight so I'll be more knowledgeable when I hear about Edward and Bella :-)
The reversal sugery was pretty straightforward. No prep, hurray, because of the ostomy. You prepare in preop in the same way you did for your other surgeries. I was under general anasthesia. When you come out they look to make you comfortable, which is when I get my narcotics! The biggiest thing for me was getting to the bathroom in time when things start to flow. Have the info you need to detach yourself from your IV drip when the urge hits so you can run. I had asked for a portable potty thing (senior moment here) but it never came. Definitely ask for one of those blue sheets so you can lay comfortablly without worrying about the bed. Imodiium helped quickly. As usual, too, it's all about drinking as much as you can to stay hydrated. I don't remember a lot of discomfort. I think I was pretty back to normal in a couple of weeks. Your diet changes to low fiber and then eventually you include others. I think a lot of people feel the reversal is much easier than getting the ostomy. I think some of my stomach fat must have fallen out because I am now somewhat lopsided. I figure when I lose some of the weight I need to things will even out. But what a difference, not having to go to the bathroom all the time. And worry about changing, etc. I have new issues but they seem to be doable. I'm thinking things will improve dramatically for you and you'll be back to your old self. Hurray. I'm thinking of there is a benefit to all this is added knowledge and compassion for people who have to go through this!
take care and enjoy your vaca.
Penny

Penny,

I hope you are having a great vacation... All good here...Have been a bit nervous about upcoming surgery, so it was nice to get more info. from you. I think, Penny, that I am more nervous that I won't be able to have the reversal and wake up with the ostomy still and another surgery.... i know that worrying is a waste of time, but i know you know what i mean... other than that, life is good...rainy here. trying to get stuff down and stay upbeat. trying to enjoy my little girl...

Bea-how are you?

Ladies be good. b

Hi everyone, im new here.
I gave birth to my gorgeous Daughter Seren exactly 7 weeks ago today, I was fully dilated for a longtime and the babys head was badly positioned and we couldnt get her out so I had to have an episiotomy and forceps :-( It was very painful down there for a while but finally by about week 3 I felt really good and when I checked down there in a mirror it looked like it had healed. Sooo stupidly me and my husband had sex - I realise now this was way too early and really regret the decision, but hey ho what can you do!! A few days after that I noticed a lot of pain and irratation down there, when I looked in a mirror it looked horrific to tell the truth, to be honest I thought I had suffered a prolapse of some sort! It hurt to walk and sit and basically do anything! Went to my GP who checked me (so painful) and she said she couldnt see or feel anything prolapsing and sent me away. A week later I was still in pain and generally feeling very down so at my 6wk postpartum check up I mentioned it again she examined me and said I was very swollen and red and inflamed down there with a bit of discharge so she gave me a course of antibiotics to take (ones that were safe to use whilst breastfeeding my babba) I finished these tablets 2 days ago and I still feel exactly the same! about 3 weeks ago I felt like i had a permanent airbubble inside me that wouldnt shift, I googed it and it came up with so many different things I decided to ignore it and see what happened. Since then sometimes when I pass gas it feels like it is coming out of my vagina. It never escapes on its own, I have to force the gas out of me and thats when I feel it. I thought that this was another indignity of post childbirth. However I just know that something isnt right, the discomfort and irratation and the airbubbles led me to this site. I have spent hours reading through all the posts and to be honest I feel gutted....I know that sounds self absorbed but it does!!! It was bad enough when I thought I had a prolapse but now reading all these posts it seems that I probably do have a fistula. I will go back to my GP this week and asked to get referred to the hospital but I am just devastated. There doesnt seem to be much hope, I know this sounds stupid but sex is so important to me and my husband, we both have high drives that this feels like its RIP to our sex life, wave good bye and au revoir!! We havent had sex since that 3 week point and now reading these posts it seems that if I have sex I may make my fistula worse?
I know that some women have had their fistula heal spontaneously but I guess this is not a common thing...I live in hope that this will happen but at the moment I just feel so disheartened. I have had a really bad time of it the last couple of years and I feel like I permanently get bad luck!! I know theres ppl out there with bigger problems but when its happening to you it feels like such a massive deal because you dont have anything else to compare it too!!
I am currently using biofem - which is a gel I get from my chemist which you just squirt inside your vagina, its a natural product that helps with irritation/redness/soreness and other stuff and is natural so im hoping that will help. I just dont want to live with this pain all the time, I know its not agony but its still very uncomfy and I just want to take myd aughter out for long walks and at the moment that seems impossible. Also can you go swimming with a fistula? I dont think im passing any faeces as my discharge is white, sometimes yellowish and there is no smell so hopefully that means its small??? I want to take my daughter swimming so badly but if it increases risk of infection or anything like that I wont bother!
Sorry for the MASSIVE moan, I just feel so empty and dead inside especially as my husband is in the army and is away at the moment. I miss him so much and need him to get me through this but argh no hes on a course :-(
I hope all you ladies are doing ok, reading through some of your posts has helped somewhat, but it kills me hearing how you've had to go through so many surgeries and they've not worked, I dont know how you summon up the courage to keep on going, I can feel myself falling into a massive pit of depression and dont know how you wonderful positive women do it!!
Anyways thats enough of my 'woe is me' waffling, just dont know what else to do!!
Love Danni

hello, am new to the site, NOT new to these fistulas however.....I have had 3 surgeries to repair and this last one, done 4 weeks ago was a painful one, cut me from rectum to vag and did 4 layers of sutures...................(the flap one earlier was a wash out within 2 days)....anyhow, i only have bm come thru after i go to the potty, and discharge coming out of both ends......has anyone out there have any success with these things healing n their own.....My CRS cannot guarantee a ileo would help heal it, it is very low and I had a sphict plasty and that has held.....I too have heard of a good dr. in Weston Fl , has anyone else gone there and had success....thanks

Danni- Did your doctor tell you that you have a fistula- You should make sure that is what you are dealing with before stressing out too much...

Flower- Wow, 3 surgeries, yuck...how large is your fistula. Mine is low as well. I have an ileo. now and it has really helped it to heal-I opted for the ostomy as my fistula got huge after the first repair....lucky me, right? I am suppose to have surgery in august (possible reversal if all looks good) my dr. did not see the fistula during the last exam. I think the ostomy has eally helped.... just my opinion.... B

Penny and Bea-hope you are both well. b

Beegirl, thanks for replying, I feel like an odd duck as my fistula isn't from giving birth, I have Crohns and ironically have given birth twice, one w epsiotomy, and no problems (my youngest is 19) until i went in to get spchint repaired, then BAM !! here it is and it won't leave !
I'm not sure how large this is, the one that he tried to fix in April was as large as his thumb and he isn't a small dr....Can the fistula come back from having the surgeries to have an ileo and reversal? How long have you had your ileo? I go back to CLE the 31st. IS it hard dealing w the ileo? everyone else...it helped to read all your threads, I feel less like a freak show now....

Hi Beegirl,

Im going to the GP this thursday and asking to get referred to the hospital. I havent had any gas passing through recently but I havent been particularly 'gassy'. Even when I am I have to be sitting in a certain position and have to 'force' it out before I feel air in my vagina, does that sound like a fistula? Or is it just small? With Fistulas does Gas come out regardless of what you're doing and with no control?
I just wish I knew what was going on, to be 7 weeks post birth and still be in pain with so much irritation even after a course of antibiotics is just worrying me! Luckily my husband is coming home on thursday to go to the appointment with me, I hope the GP refers me to the hospital without too much fuss as I dont want to keep being fobbed off!!!
Thank you for your reply, I just dont know what else it could be?
Hope everyones doing ok
Love Danni x

Flower- I am sure that having Crohns makes the healer much more dificult. Let's see to answer your questions, I have had the ileo since December and honestly, it is not as bad as it sounds or I expected. It was much better than dealing with the fistula...it was very large. It took a month to get use to, now it is second nature. I do almost everything i did before. I am not sure if it is def. gone yet, will know after surgery and yes, I a sure it could come back at any time. I am surprised your dr. did not suggest the ileo. because of your Crohns. My surgery would have bombed without it. Be good, b

Dani-if there is no gas coming through then it may not be a fistula or it may be healing. Make a list of questions to ask your doctor-hope your visit goes well.

Best, b

serensmummy.........I passed alot of gas thru my fistula before this last surgery 4 weeks ago, i know the fistula is still there due to the presence of stoolie, but this time I am NOT passing any gas thru, so my guess is to wait until your GP tells you otherwise and try not to make too much out of this until you know...you'll drive yourself nuts and get stressed out.....don't force anything out..!
i now have a lump next to the incinsion line that hurts real bad and am going to a surgeon friend to have him look....praying it's not an abcess from the stitches.....good luck...

hey beegirl ! I ended up going to a local surgeon here in my hometown quite unexpectantly, he did my resection 17 years ago, to have him check out a painful lump that showed up a couple of days ago right next to my incinsion line and guess what ! a new fistula formed...a perianal one, I guess the bacterium decided the trip to the vag was too long and bothersome so it created a new one, much shorter and direct out thru the stitches.....no wonder healing wasn't progressing...........long story short....he says get a temp ostomy to let the area heal up since my CRS won't touch it for another 6 months anyways, see what happens, then get the fistula(s) repaired, hang out w the ostomy awhile longer than get it reversed. The fact that my F was so low, I guess my crs figured a layered approach would take care of it......wrong....

I am trying to decide whether a colostomy vs an ileostomy would be better? Since I have Crohns and it involved my small intestines, thus my resection site is there....maybe a colostomy would be better.....any thoughts? Plus all my past scars from surgeries are on the right side of my tummy.....cut the left....!

Is it difficult to maintain the stoma site and change out bags....did you use reusable ones or disposalable ones, did you get an infection at the site? i have alot of questions !! when is your reversal set for? Are you nervous?

thanks...R

Flower R-sorry you got that news about another fistula. Okay, I will try to answer your ostomy questions. With the ileo. I have output all the time, basically. I empty my bag every 2-3 hours, sometimes less, sometimes more. It sounds bad, but it isn't really at all. I change the system every three -four days. By the fourth it is very itchy on my skin and time to change. Once I found the right sysyem for me, I had no leakage problems, really, except, I did have a filter bag--and had two leaks through the filter piece because it got restrained by clothing and a seatbelt.... anyway, i use a two-piece system, which is slightly bulky, but no one can tell, unless you tell them. My stoma was placed in an awkward position, which makes it hard for me to wear some clothing, not a huge deal. The supplies are expensive without insurance, I am covered now. I will tell you more if you get an ileo.

Colostomy-ask someone on the sight-I believe Bea has the colo. from what I understand there is much less output...and you cab irrigate...go to ostomyland's website and ask away, it is a cool site for ostomy questions. My ileo, quickly became norm., i had an awesome ostomy nurse who helped me so much in the beginning, now I just live life....I did gain some weight, mostly from, I believe, depression in the beginning. I take an anti-depressant, which has really helped take the edge off and helped me put things into perspective.

YES, I am so terrified about my upcoming surgery. But what will be, will be. I hope I can get a reversal, if not I will go from there.

I hope this helps a little... I just want to say that it really is not the end of the world. When I got the ostomy, i learned about so many others that have had them around me, i would never have guessed. Including my brother's young friend-who had to ostomys because of crohns--no one would guess.

Please feel free to ask-a-way, and I am sure Bea and Penny will chime in too.

Be well. B

opps two ostomys-not to- i hate when I type fast then see mistakes. b