Recto-Vaginal Fistulas - Part 5

Hi B,
Great news! I'm really pleased for you. THere is hope. I am getting ready for my op. Many thanks for everyone for your good wishes - it means a lot. most poeple at work don't know what's really wrong and it is great to have people who know how it feels. I just hope the repair works this time.

Flower, good to hear form you. I guess just see how things go - I am having a repair with the ostomy but you may not need it. bee girl seemed to have her fistula come back adn then repair it self after her ostomy.

Anyway I hope the next time I post it will be after the op (sometimes our health service lets you down on the day).

Everyone hope you are well. Stay positive!

Bea

Hello everyone,
That is great news, b. I absolutely needed time to be convinced the the fistula was actually gone. Going through what we have, and dealing with the medical profession it can be hard to believe what we're told. It sounds like all is going well so that is great. How is your diet? Hoping your wound heals quickly. I ended up with a rash but that was taken care of quickly. Did you get any adivice regarding how long before your intestine was 'back to normal' in the sense you could eat whatever? I have heard 6 months and then one year, which I like better. I don't remember how long you had the ostomy but I know it takes a while. Keep us posted and think positive!! I know it's easy for me to slip into doubt.
Bea, we're all hoping for the best and thinking of you. Let's hope your medical system doesn't let you down on surgery day. I would think that would be so frustrating. I know what it's like to go in for surgery and then have to head home. Good luck to you!!!
Flower, for healing the only thing I did was take zinc, not sure if it's chewable and the advice was to eat a lot of protein, which is supposed to be good for muscle growth. I think. I wonder if a natural food store would have some advice for you? You seem to have a great outlook and I think that does wonders, letting your body do the work without added tension.
I am doing pretty well. My hubby accidentally threw away my probiotics on his last run to the dump so I just ordered more. They seem to help which is good. I think I'm about where I'll be longterm. I'll have to keep doing the kegels and exercises which I think I should be doing at my age anyway and eating well, which again is good for me overall. I will just have to be more watchful of bathrooms in the a.m. and include cotton balls and wet wipes as part of my morning routine.
Penny

Penny-did you have constipation issues after the surgery??? I think I am getting constipated, took stool softners, but really nervous about that obviously that is no good...did you have this as well?

Hi all, be good, b

Hi b,
I think typically things drop out of you like water at first. Are you taking meds of any kind? If they gave you immodium before you had your first movement that may have slowed things down a bit. Usually people pass very loose stool multiple times a day I think. What exactly are you experiencing? have you checked in with your MD? I think it would be hard to be constipated unless you're taking a lot of constipating meds and haven't gone for days.
Penny

Penny,

I did pass loose stools a few times, then stopped... I got my period (always my luck) and usually I get constipated the first day or so of my period...anyway, I am taking a pain killer that may cause constipation, so I am taking stool softners too. I guess I will have to just wait and see. I have been drinking tons of fluids to avoid constipation as well. Be good, B

Hi Beegirl.....hope you are doing good...and you made me chuckle about your period, that seems to be my case also, not just on vacations, but trips to the hospital, when I have surgery, procedures, whatever, I can't wait for menopause......Hot flashes and what not can't be any more "trying" than living and dealing with these fistulas...... I do have a question though,

How soon after my colostomy should I even go back to have my RVF checked to see if it's healing, shrinking or just lying in wait ...?

I am not in a hurry as I am enjoying life and eating again thanks to Stella Stoma, my new best friend.....mmmmmmm... I went to Mass yesterday and sat in the back in case I had to bolt...but things were ok....I kid my Dr and husband and tell them they have to sign a release form whenever this appliance comes off to be replaced because of the odor.......but I haven't been back to my CRS since the last failed surgery 6-10-09......i assume we are talking months here, I have connected with a different surgeon that has done alot w RVFs and says she will have a consult w me if I wish...not sure what to do, so I am not rushing things.


Bea, lets hope you have the surgery, it can be nerve wracking............please stay up beat and let us all know

Everyone....keep smiling and hang in there, better days ahead..
Flower

Hello everyone,
b, it sounds like you're doing all the right things. I used to get constipated on the first day of my period as well. It must be a fairly universal phenomenon for women. Did your MD suggest being constipated would somehow affect your (former) fistula? My MD was more intent on keeping things firmer as she worried being loose might make the fluid find the fistula and pass. I'm sure it will take a while for things to be your normal. I know it worried me all day for a while, thinking about what was happening and if I'd have leaking or if the fistula was REALLY healed. My MD was confident it was gone and I tried to hold on to that. Let us know how things are going.
Flower, I had one MD who tried to do a reversal in 6 weeks without checking to see whether or not it had healed. That's when I switched MD's. I think months is reasonable. A consult is always good. She may have some suggestions or recommendations or tests that help determine what your next step might be. It's great that your comfortable with your SS (Stella Stoma) and have patience. That seems to be so important.
Bea, we're all hoping for good things for you. Keep us posted.
Penny

Hi Penny.........after reading your post, I am odd I guess, I get terrible terrible diahrrea when my period is about to start, that I have learned to take flax oil 7-10 days prior to help slow it down......I have never been constipated in my life...always the exact opposite and yes....the constant flow of diahrrea is what has destroyed my odds of my RVF repairs to heal, way too much stool passing thru often, that the bacterium prevented the healing.

This was the problem I had with my CRS...he just didn't "get" it....I need to eat foods that bulk me and stop me up.....he has it figured out now, my general surgeon that did the colostomy honed in on that right from the get go.....So that is why my chances of a success repair has improved just by having SS !!
I just hope the tissue isn't scarred and destroyed too much, the gen surg. said he could see alot of scar tissue in there when he flushed out the rvf after the ostomy was done.....and he said he saw a flap in there that was helping to keep massive amounts of stool from coming thru all the time, I only had stool come thru when I had a b.m.
I'm telling ya. I am odd, but I do have Crohns and have had a re-section and one former fistual surgery 17 years ago. And back when I was in High School, a fissure surgery done......And my spchnicters were damaged so bad that i had to have the spchnt-plasty done in Jan which led to this rvf, which I am dealing w now.....Life is not dull for me......................Normal is so over rated, I tell myself.

So hard stools..bad, as they can damage the surgical site and runny stools....bad,as they can find it's way thru and literally destroy stitches which is what happened to me.......So finding a happy medium is the key I guess...iIthink I will wait it out for a few months before I start the next plan of action, as I am sick of Drs right now......thanks Penny for the advice, I will do the consul at least for now and the rest of you, hang in there, keep us posted on the outcomes and know we are all here for you !!!!

Flower

Hello all, I'm new here and absolutely in tears over finding this forum. I've had my fistula since my son was born 18 months ago. I just had it officially diagnosed a couple weeks ago. I know you all understand the physical and emotional stress that these cause, it is absolutely horrid and makes one feel so alone and outcast.

I have been fortunate as far as having an ob/gyn doctor that is absolutely wonderful, once I shared with him my symptoms, he immediately located the fistula and gave me a diagnosis. He offered to do a vaginal repair but also recommended a colo-rectal surgeon that is, from what I've heard, supposed to be one of the best surgeons in our area. I'm really interested in the surgisis plug procedure at some point but have yet to find anyone who has had this procedure and had success with it. Anyone here have or know of someone that has?

I've also just found out that I'm expecting again sometime in April, (obviously repair will be postponed ;-) ) which I'm over the moon about, but definitely concerned due to having the fistula. I'm more worried about infection and such effecting the baby, though my symptoms have been very minimal compared to some I've read about. (Mostly gas passing through the vagina). Anyone else gone through pregnancy with a fistula and care to share your experience? If so, how did you deliver? I'm still wanting to do a vaginal birth considering I haven't had any surgeries yet, and my doctor is ok with this as well.

I also wanted to say, we are all beautiful regardless of this emotionally debilitating diagnosis so keep your heads up ladies!

Tater's mom,

I have a recto vaginal fistula from my first child. I got pregnant again and delievred vaginally. It didn't make the fistula worse. I had my second child 3 years ago. This summer I got a flap repair from a colon rectal surgeon and it was a flop! I am worried that it could be bigger now. Not sure though. Dr. seems to think that it could just heal in the next few months. I seriously doubt that. Ugh! I don't know what to do. Just talk to your Dr. about what he thinks you should do for your delivery.

Bee Girl-

I am glad you are doing good. Keep us posted about your recovery. You give me hope.

~CJ

Tater's Mom - welcome to the forum. Sorry you have this problem, but I'm glad you found us. Congratulations on expecting another child! This is one of my dreams, but I'm fearful it won't come true - mainly due to the fact that my husband and I can't (won't?) have sex until the fistula is all gone. I have just gone through my first attempt at a repair combined with a sphincteroplasty, but the fistula reappeared about a month post op. I don't know much about the surgisis, but I'd be interested to hear if anyone knows anything about it as well.

B and Bea - hope you're both doing well and progressing in a positive direction. I've been thinking about you both lots and sending good thoughts your way.

I saw my colorectal surgeon this week for a 12 week post-op appointment. She examined me digitally through the rectum and said she could feel the fistula. She said it feels like it's at the top part of the repair, possibly the top part of the original fistula. I am both relieved and a little frustrated that it is essentially the same fistula and not new one. Not that one would be better than another. She said it seems to be smaller than before, which I believe is true since the poo that comes through is MUCH smaller and almost just liquid compared to the chunks from before. I told her about my few days last week without poo coming through, and she seemed to just think that there must have been something blocking the fistula instead of thinking that the fistula was closing up. I had another day without poo coming through yesterday, which was nice, but I am little less optimistic about it closing on its own now.

We talked about the next step, and she said she'd go back in in three months (six months from the first surgery), and would do an advancement flap this time around from the rectal side. The last one was a sphincteroplasty with a layered approach from the rectal side. She said she wouldn't do an ostomy until we hit a third try, which she hopes we won't have to. She said she tries to leave that until nothing else has worked since studies have not been conclusive as to whether an ostomy helps the healing or not. Logically, it makes sense that it would help, but this is what she says. She's very active in ASCRS, and has a good track record in the DC area, so I trust her. I think I may go for a second opinion though just for my own peace of mind. Any thoughts on going in for a second attempt without an ostomy? They scare the heck out of me, but you all seem to be dealing with them so well. I'm also going to have stopped breastfeeding by the time of the next surgery and (hopefully) will resume my periods so that my estrogen levels will be higher in an effort to help with healing.

It's my daughter's nine month birthday today, and it's hard to believe that she's been out now as long as she was in. We celebrated in the pool, and my day was definitely brightened by her little smile. I hope you are all doing well. Hang in there. We will all be on the other side of this sometime soon!!!

All the best,
RLWMom

To Tater's Mom and others
I have been lurking on the site for about 6 months now. I also am a fistula girl, age 36. After a large baby of 10 lbs, tear and epi, I have made it through to the other side and am fistula free. I self diagnosed as the symptoms seemed obvious. There is not much else they could have been. Mine was uncontrollable air with stool if it was soft or had seeds (i know gross) I did some net research and ran into a colorectal text book. It mentioned under the rectovag fistula section that uro/gyno's will often times do a transvag layered approach, with a 88-100% success rate. I knew I needed to find the doc to do that exact procedure. This procedure can be done if the sphincter muscle is not damaged. I also thought the Surgisis Plug sounded great, of course. I went to the Mayo Clinic in Rochester MN. The Doc that I had was amazing. He had done 12 fistula procedures when I met him. I inquired into the Plug, he said that he had tried, but with no success. So I opted for the transvag layered. (my sphincter was fine) If while he was doing the procedure he nicked my sphincter he would have done a sphincterplasty. He came close, but did not hit it. Again great Doc. My recovery was pain-free. I was one night in the hospital, on liquids for four days and soft foods/no fiber after that. (6 weeks) No lifting over 15 lbs. (6 weeks) I was very nervous the entire time managing elimination of all types. All of this while breastfeeding! It did heal and it has been almost 3 months post op.
You are pregnant again (congrats) I would not worry about it and fix it after you have the baby. You will have time to find a doc and decide, there really is no rush. I also spent many hours crying and reading this site.... But please have hope.

Cat5,

Did a colon rectal surgeon do your transvaginal repair? I mentioned in my last post that I had a flap repair on the rectum side that didn't work. How big was your fistula?

Do you all think I should look into a urogynocologist repairing my fistula for a transvaginal approach? Who would be the best specialist for this repair Colon rectal or urogyn?

I feel like at least my colon rectal doctor knows exactly where my fistula is and he's already been up in there..... but I want someone that has the most experience with a transvaginal repair.

Let me know your thougts!

So glad Cat5 that things worked out for you!

~CJ

Dear all,
Just wanted to let you know how I was getting on. The repair was done on Monday (10th) and so far so good! I came home 2 days ago. From previous experiences the 4th and 5th days are the ones when infection seems to appear and here I am - just sore. NO swelling, no temperature, no needle pains. A great relief. I am not sure of the difference (if there is any) between an advancement flap and the layering technique. I know that they excised the fistula and used a flap from the vagina to cover the hole in the rectum. The surgeon said the 'layering' went very well this time. This all sound very positive.

I am doing my best to stop anything going down to the rectum - with the loop colostomy this is difficult but so far the stool is more firm than usual, and (please forgive the detail) I am wearing loose clothes and can push the stool down the bag as it comes out. This is a luxury not possible for a range of reasons normally when I am at work in the company of others!!

Having read Cat5's post (and thank you for reminding us people recover) - this seems the best possible approach to the repair without an ostomy and the best possible post op advice - not available to me at the time I had mine done but for RLW mom this post might be V useful for you. I had two repairs before the ostomy. I find it amazing that the evidence is not conclusive about the ostomy. Surely they aren't comparing like with like? Some people can heal without an ostomy so they will put the success rate up of repairs with no ostomy but for those of us who progress to the ostomy we are already a population of patients for whom healing is difficult.

Question for bee girl and Penny and anyone else having a flap repair with the stoma - how quickly did the the fistula re-appear? I think you both had the repair fail and then re-heal? Did you take antibiotics after the repair?

Flower - you and me are similar - I get looser stools round my period. The stomach cramps seem to bring it on. And I think that generally my stools are too loose which is why the repairs have failed. I occasionally get constipated but there is no happy medium for me. I haven't been diagnosed with any digestive disorder but my bowel does seem irritable.

Bee girl - I hope that things are continuing OK for you. Have you sorted out the fibre balance OK yet? Fingers crossed for everything. I hope I will be shadowing your steps soon!

Best wishes to all,
BEa

Thanks all for your encouragement! I hope each one of you gets to the other side of this soon! Cat5, I'm so happy to hear there is hope, and so glad you are fistula free! I think that is the procedure my OB offered to do for me (obviously before finding out I was pregnant). Is that where they go through the vagina and cut through the layers and put them back together layer by layer? He said the same thing about the sphincter (sometimes they cut through it and sometimes not, I think it depends on where your fistula is maybe?! and of course sometimes it is accidentally nicked.)