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Rectovaginal fistula and colostomy

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Posted: Mon Dec 19, 2011 11:43 pm
I am a neebie and was wondering if anyone has a colostomy due to a rectovaginal fistula. I have had the colostomy since June 2007 and have tried on 4 different attempts to have the fistula corrected. In January I am due to have another repair attempt using the gracilas muscle from my leg, then after recovery and if it holds, have the colostomy reversal along with a hernia repair. I am very apprehensive about this attempt to repair and really wonder should I go through with it or just keep the colostomy and just repair the hernia. Any suggestions???
Thanks,
Tracy
Posted: Tue Dec 20, 2011 3:57 am
I have an ileo due to a RV fistula - been operated on 9 times unsuccessfully and then found a brilliant surgeon who repaired it last year ..... not sure where you are in the world I am in the UK, contact me if you want any more info x
Posted: Tue Dec 20, 2011 5:15 am
Thank you for responding!! I live in the United States in Jackson Tennessee. What procedure did your doctor perform to repair your fistula? Was the gracilias muscle ever used? Are you going to have your colostomy reversed? Sorry for all the questions, it's just that I have had no one to ask before now!!lol
Posted: Tue Dec 20, 2011 6:41 am
Hi go to my profile and look at my blog - that explains my journey, rather lengthily mind! Not updated it in a while but I should, soon ....

My fistula was finally repaired by a Uro-gynaecologist in London who does a lot of work with obstetric fistulas in Africa - whereas colo-rectal surgeons just seem interested in the rear end - she works on the whole of the pelvic floor and did it in 45mins using the muscle I still had left down there. There was talk of using leg muscle but didn't need it fortunately ...

I found her through the UN Campaign to end fistula in the developing world (although we still do not know how mine developed - possibly through a Bartolins Cyst.)

http://www.endfistula.org/public/

I am now waiting to have a hernia repair and removal of colon etc as cannot bear the thought of reversal as now so much wrong with me couldn't cope if it went wrong

Any more questions just ask away and I will try and help!

Rach xxx
Posted: Tue Dec 20, 2011 8:49 am
Thank you so much for the info!! My first two attempts to repair the fistula were done by a GYN, then the next 2 were done by a colo-rectal surgeon, then he referred me on to a plastic surgeon at Vanderbilt who has done many surgeries on women who have had cancer and radiation. My fistula was caused from childbirth and was repaired back in 1989 after my last child. Then did not appear again until 2007 when I went to my local GYN who said it was the size of a pin point and he would have no trouble fixing it. Well, a week later I was back in for an emergency colostomy!! This is when I found my GYN at Vanderbilt in Nashville, TN who said the first doctor did not do the repair right and everything broke down. I am just really nervous about this surgery and him using the leg muscle.
Thanks again for the info, I am sure I will be asking many more questions as the time gets closer! Have a great day!
Posted: Tue Dec 20, 2011 8:49 am
Hi,
I to have endless problems with fistulae several unsuccessful repairs and now i am off to see some professor in London as my team are at a loss at where to go next although i could tell them where and how to get there but being polite I won't. Rachel gives me hope i will get there in the end though!!
Good luck with your next adventure keep us posted
Trish
Posted: Tue Dec 20, 2011 8:59 am
Trish,
I know what you mean about telling them where they can go!! I am a nurse at my local hospital and the doctor who screwed up the repair is on staff there too. Everytime I see him I have to bite my tounge! It is very frustrating to say the least. Yes, Rachel's story give me hope too.
Did they have to use the leg muscle in any of your repairs? I will keep you all posted and thanks for responding.
Tracy
Posted: Tue Dec 20, 2011 9:08 am
                                 
StarUK wrote:
Hi,
I to have endless problems with fistulae several unsuccessful repairs and now i am off to see some professor in London as my team are at a loss at where to go next although i could tell them where and how to get there but being polite I won't. Rachel gives me hope i will get there in the end though!!
Good luck with your next adventure keep us posted
Trish


Trish
If you need the name etc of my surgeon, let me know - she has had several people passed on to her recently from myself - I said it was her own fault as she was so good! She is lovely too - also in London at University College Hospital. xxxx
Posted: Tue Dec 20, 2011 10:09 pm
I had a rectovaginal fistula repair using the gracilis muscle within the last 3 months.My colorectal doctor and a plastic surgeon did the surgery.  I believe the worst part was the incision on the inside of my upper leg. I did have some pulling sensation inside my vaginal area, but after a recent surgery to check things out, the doctor found 2 vaginal cysts that he removed and cauderized an area of the surgery. I go tomorrow back to Johns Hopkins, where my colorectal doctor is to be rechecked, have a gastro graphic enema done, and pre op work. I am scheduled for a reversal in Jan. I would totally recommend all this work so far and my doctors have been wonderful, after having the problem occur at Shady Grove hospital. Let me know if I can answer any questions you may have ....good luck
Posted: Tue Dec 20, 2011 11:34 pm
Thank you so much for responding, your information was very helpful. I wish you the best of luck with your reversal. You went to a very well known hospital with some of the world's best doctors, so I hope my attempted repair will go as well as yours did. I do have several questions if you don't mind:
1. how long was the surgery
2. how long were you in the hospital
3. how long before you could move around
4. did you have any complications while in the hospital
5. was the pain bearable?
I guess I could go on and on! lol  And I know that everyone's surgery and recovery is going to be different but it can't hurt hearing from those who have been there already! Any tips you can give would be great. Thanks again
Tracy
Posted: Wed Dec 21, 2011 9:41 am
The surgery was approximately 4 hours and I was in the hospital for 3 days. I could get up and around the next day, but they like you to not do that right away. I had no complications in the hospital and took no paid meds, as it made me feel sick. So I just tolerated it. I came home with a drain coming from the top part of my leg, which didn't feel the best and had that removed along with the stitches 6 days later.  Hope this info helps. If you need more questions answered don't hesitate.

Good luck
terri
Posted: Wed Dec 21, 2011 10:00 pm
Thanks, my doctor did tell me I would have a drain. I am just so nervous but am going to go through with it. I will probably be messenging you after the surgery. Good luck with your reversal!! Hopefully I wil be able to have that done too!!
Tracy
Posted: Sun Jan 01, 2012 10:10 pm
Hi ladies - gosh, I read these posts with increasing trepidation because for Christmas Santa brought me TWO fistulae - between my bladder and sigmoid colon and bladder and "rectal stump". I got this news (finally) from a new urologist after 2 years of UTIs and almost complete urinary incontinence.  I'm waiting now for my surgeon to return from holiday, but the urologist did say it would be a "huge" operation to repair them.  I'm reading up on options for repair (which don't seem many).  I wondered what the "gracilis muscle" repair was.  You ladies (esp. Rach) have really been through it, and I thank you for sharing here.  I have had mostly sleepless nights since getting the diagnosis Dec 21.  Now I know the kind of thing I am facing and am actually kind of grateful to realize this could be a major hurdle instead of just "a bump in the road" (as people not going through it like to say!)
Posted: Mon Jan 02, 2012 2:16 am
From what I understand from my doctor, they are going to take the groin muscle from my leg and tunnel it up to where my fistula is between my rectum and vagina to make a muscle flap so it will have good blood supply in order for everything to heal. Then hopefully I can have my colostomy reveresed! I googled gracilias muscle flap and they had some really good reading on the procedure. Good luck to you!
Posted: Sat Jan 07, 2012 5:15 am
Hi ladies iv only just joined i had an rvf due to childbirth. created an fb group called 'living with a colostomy' had the stoma 2 weeks after giving birth.
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