Seeking advice on rectovaginal fistula repair with colostomy reversal

I am a newbie 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 gracilis 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

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

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 gracilis 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

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-gynecologist 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 45 mins 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 Bartholin's 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

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!

Words of Encouragement from Ostomy Advocates I Hollister

Hi,
I too 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,
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. Every time I see him I have to bite my tongue! It is very frustrating to say the least. Yes, Rachel's story gives 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

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

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 cauterized an area of the surgery. I go tomorrow back to Johns Hopkins, where my colorectal doctor is to be rechecked, have a gastrographic 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.

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

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 pain 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

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 messaging you after the surgery. Good luck with your reversal!! Hopefully I will be able to have that done too!!
Tracy

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!)

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 reversed! I googled gracilis muscle flap and they had some really good reading on the procedure. Good luck to you!

Hi ladies, I've only just joined. I had an RVF due to childbirth. I created an FB group called 'Living with a Colostomy'. I had the stoma 2 weeks after giving birth.

Thanks Rachel
Seeing a professor at St. Marks in London, the Bowel Hospital. Apparently, he takes on lost causes. Will see what he has to say, but if I am not happy, I will let you know and ask to see your lady.
Trish

Well, I had the surgery on Jan 11th. I was in the hospital for 6 days, then had to take me back to the OR on the 5th day to remove the bandages. I had a follow-up on the 23rd, only 80% of the skin graft took and the doctor used some silver nitrate on an area. I go back on Feb 3rd and hopefully he will tell me the surgery worked!! My leg is still swollen and it is hard to walk still. I hope this was all worth it.

I had a rectovaginal fistula in Edinburgh back in 1990. I had it repaired at the Western General. Unfortunately, I still needed a coloanal anastomosis, but had that done there too. Now in 2012, I live in Florida and have developed another fistula to the bladder this time. I had it repaired, but it did not take. Now looking at muscle flap repair or ileostomy.

Meg

Rach, did you have radiation by chance? I have not read your bio yet, but I will. Is that doctor you mentioned named after a color by any chance, ha ha.

Meg

Hi - no radiation or anything like that, just a fistula .... and not a color! xx

Ha ha, thanks a lot. Hope you are doing better and glad things worked out for you.

Meg

Oh, they haven't yet - still awaiting the damned surgery that was cancelled in October.     xxx

Oh, so sorry, I missed that. Would you let me know how it goes for you when you eventually get it done? Let's hope that is soon. I had a RV fistula in Edinburgh nearly thirty years ago. It was repaired up there by the prof - now deceased. He had Parkinson's when he operated. Just want you to know it has lasted all this time. Now I have a VV fistula, but nothing to do with the first repair. Also, wanted you to know I enjoyed your post on the state of the NHS.

Meg

I would love to hear how this went.

I am scheduled for this surgery in a few weeks and am trying to find more information.

Jings, you have been waiting a long time. Is it always like that now? Although I know you are waiting on a specialist and I guess she is in high demand. I bet you are excited. I am excited for you. I think it is hard to find out information as it is not that usual a surgery. I google all the research papers, etc., but even then there are not that many, and few that are recent. I think you are in the right place; you have the best. - Meg

I had this surgery in November so I am 10 weeks post-surgery. It was a doozy! I was in the hospital for 8 days, 7 of which I was not allowed to sit or get up. Then I was not allowed to sit for 3 more weeks. My colostomy is supposed to be for "3 to 6 months" but my plastic surgeon is saying he is "conservative" about these and is leaning towards six months. :/

Parts of my calf are still numb and so is a lot of the skin around my incisions.

I would love to hear more about the recovery and what I can expect my "normal" to be.

Thanks!

Hope you are doing well, don't be in any hurry this kind of surgery seems to take time. I had a friend in England have it done and she was on bedrest for four weeks but is doing well with light duty at home. Can I ask you which hospital you had your surgery in? I have been to several large hospitals including the Cleveland Clinic and did send my records to Duke but they said they did not do that kind of surgery on patients that had radiation damage. Anyway, best of luck for a full recovery. - Meg

I had my surgery in Greenville, NC. (Vidant Medical Center) The colorectal surgeon was from Physicians East and the plastic surgeon was part of ECU Physicians.

I have not had radiation.

Thanks so much, wishing you well and all good things for 2013. - Meg

Hello Meg-(Highlander)

I think page 3 of this discussion was lost. The consultations I have had indicate Cleveland Clinic in Ohio is where I should have my rectovaginal fistula repaired. You said your repair at Cleveland Clinic failed? Was it the Fla Clinic? Have you had your surgery at NYU? How are you doing?

Teena