Living with a Recto-Vaginal Fistula - Anyone Else?

Hi, I don't think I have been so active on the Forum scene, but do read a lot of your posts, many of which by the way have me in stitches!



I have had an ileostomy since 2004, and only have one in order in theory to enable the repair of a recto-vaginal fistula.



Does anyone else out there have the same condition - would love to know, as I am feeling a bit of a rarity!

I don't know what a recto-vaginal fistula is so I guess my answer would be no, but I am interested to hear what it is and how it led to your becoming an ostomate if you would like to share more.

Thks

about a recto viginal fistular i,ve had my ileostomy 3 years now i have just been diagnoised with this after suffering 2 years got to go back in hospital soon to get it sorted its a horrible thing... will let you know how i get on

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Hi Lottagelady,



I have suffered from a recto-vaginal fistula. It has been the reason for my colostomy which was deemed to be temporary. That was 8 years ago !



After my first surgery I had a massive infection and when at last that was over, I noticed that the fistula was still there... New surgery with same results. Then, a loop colostomy to prevent further infection after the impending surgery.



Even with the colostomy, the fistula took ages to heal (about 4 years). Now it looks as if it's gone for good but I'm now used to my bag, it doesn't prevent me to lead a normal life and I fear so much a new surgery that I prefer to stay the way I am !

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Hi, from what I understand, this is a canal that joins two organs - with me, my vagina and rectum... and is usually caused by Crohn's disease or birth trauma... (I had two elective cesarean births and no Crohn's rearing its ugly head, so a medical enigma there....) It started off as an abscess which did not respond to antibiotics (and felt as though I was sitting on a growing cactus!) and was thought to be gynecological, a Bartholin's Cyst. I informed them at the time - 11 years ago that this abscess was draining out of my rectum, but no one would believe me, despite the fact that I know my own body and am a trained nurse! The abscess was operated on, but 9 months later came back, 6 months, then 4 months after that, then 2 months, until I was having these abscesses approximately every 2 weeks - I would have a day when I felt as though I had the flu, then 2 days where the thing grew and was painful, then would burst on day 4. What joy! Seemed to be on permanent antibiotics and the gynae dept kept saying they couldn't see it. Purely by chance, I got to speak with a colorectal surgeon, who asked that I go to see him next time I had an abscess, which I did, and following an MRI my fistula was found 3 years after the initial abscess. Then followed seven anesthetics where a seton suture was inserted to keep the fistula draining and prevent more abscesses, which is what they did except some only lasted 24hrs. I then sought further advice from my surgeon as to what could be done to improve things, so had a repair done to the fistula. After being home 3 days, the wound became infected by the bacteria present down there and the repair broke down leaving me fecally incontinent through my vagina. I was horrified, but had to wait 4 months to let the whole thing settle before trying again... same happened. At the 3rd attempt I was offered an ileostomy so that the wound would have a chance to heal, the ileo could then be reversed and things would in theory be sorted.......... I'm not that lucky.......... Parastomal hernia began to develop.

Referred to another surgeon in Oxford - had I think 5 repairs there, onset of diabetes due to trauma, pernicious anemia presumably due to absorption issues following ileostomy, sleep apnea, spinal trouble due to huge hernia - slipped disc in neck 2008, arthritis setting in in my hands and later today I'm due an MRI on my lumbar spine as my ankle reflex in my left foot has disappeared and my foot is numb.........

I have had approximately 20 anesthetics since 2001. Every so often I get abdominal issues where I need an injection from my GP or an overnight stay, and am on permanent morphine patches for my back as I am unable to walk far. The next step would be to slice my abdomen from breast to belly, move my stoma to the opposite side and repair the hernia....... NO!
I've had enough now, have adapted to my ileostomy and my other issues and the thought of more surgery, major stuff at that....... my body and mind cannot take it anymore, giving me another stoma will undoubtedly create another parastomal hernia on the other side, so I will be no better off. The area around my fistula is now so scarred that a repair seems unlikely anyway. I am no longer able to work and use a mobility scooter to get me around my local area and take my dogs out...... My MRI scan is presumably going to show progressive degeneration of my spine, so something else to look forward to! However, I have been internet dating for a while and have met a lovely chap who copes admirably with my 'eccentricities', we will see - early days..............................

Wishing you all the best of luck, will keep you posted!

Rachel

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Words of Encouragement from Ostomy Advocates I Hollister

Hi, This is the exact reason i have permanent colostomy!  Nice to find somebody else who has the same thing, though mine is healed and over and done with now. The only difference is i dont have disease or anything, it was a pure childbirth mis-management, i cant go into too much detail right now as im pushed for time, but would love to hear from anyone who has has this, or is going through a hard time of wants advice.



best wishes,



Betty.x

Hi Betty, would love to know what ops they did to heal yours and what type of surgeon did them, as mine is now heading for its 9th repair (have a read of my blog if you want to know the whole story!) Rachel xx

hi



i had an anal sphincteroplasty after something like 7 other tries to heal it, things like using flaps of skin etc... so the final one worked,  I had this done by a colo-rectal surgeon that my own surgeon referred me to. all done on the nhs.  This was about 3 years ago (i'd already had my stoma two years by then) but now i suspect it may have come back, but much smaller than before.  My fistula was pretty low down about an inch or so in and was only about 5 mm wide, but big enough to cause embarrassing wind and liquid leakage.



hope this helps



Betty. x

Hi, I too had a rectal fistula for 6 years. After 6 surgeries, and a final 2 part operation, the surgeon was able to repair it.  That was before my ileostomy.  I do now have a small fistula next to my stoma.  With having that, I now have to buy the flanges that I have to cut away a smaller area for the fistula to drain.  Oh well, Iguess it could be worse.  I am taking a new supplement that I am presently selling and it works like a dam on an any digestive or intestinal issues.  It is called Aloe Gold with a company called Univera.  If you are interested, let me know.

After my ostomy surgery, I was left with a hole in the wall of my vagina, torn by the surgeon and repaired mid-surgery by a gynecologist who was there to remove my ovaries. The stitches didn't hold, and for months, horrific substances poured through my vagina from my abdominal cavity. First fluid, then blood and giant clots, and finally thick green soupy pus, full of E. coli. Not exactly a fistula, but I wonder if it could heal on its own, if fistulas do. I suppose I should go and see the doctor... the gynecologist... who tried to repair it. Maybe he can tell me if it's fixed... and whether I will ever be able to have sex again... Not that I'm looking for a man. But it's nice to imagine there might be someone in the world who might be worth spending time with... I'm not very optimistic or enthusiastic about that, but... it could happen. My vagina was also shrunk by radiation, so... I tend to think sex is just history for me. I need to work on getting well and writing books and screenplays. That doesn't leave time for... men. Besides, I live in Hollywood... need I say more about the availability of "quality" men?

I had an operation back when I was about 12 that left me with a vaginal fistula, and I've heard a million and one stories about fistulas healing, but it's been about 10 years since then and I still have it. Is there anyone out there with the same problem? It makes it really difficult to live a young 22-year-old person's lifestyle with this holding me back so much.

It takes so little to make someone feel good.

Yes, I have an ileostomy and ended up with that dumb fistula... Actually, I am glad to hear I am not the only one to get it... I only had my rectum left... Long horror story short... because I was still full of "infection" a year after my ileostomy, (because my colon was so sick) I had to have more surgery... The doctor removed the little bit of rectum left and sewed up the anus, fixed the hernia, and put draining tubes to get the infection in my gut out... and now... all better! No more fistula and sex is once again okay to have.

But that was last year... All is beginning to get back to the me I used to know... including confidence... and my own acceptance of this situation. Life is good, and for me, life continues and I am so very grateful.

I'm 63.

Janet

 

 

 

 

 

Hi all,

I had my ostomy surgery when I was 15, and then had the rectum removed when I was 19. Lots of complications ensued (loss of bladder sensation), but other than that, I thought all was well.

Married, and had my first child... and that's when the infections started. Could not clear up a bacterial (not yeast) vaginal infection for 2 years. After many tests (with 15 doctors in the room/teaching hospital), it was determined that I have leakage somewhere, but they were not able to detect the location. Because the infections came and "went", they thought the leak must be like a flap, that opens and then closes. Although I had a normal/healthy sex life, I also douched regularly... which is not generally recommended. It was the only way to control the ongoing "irritating" discharge.

"Sorry guys," this is real life, for the women who have been rearranged internally, and then get on with life and give birth.

I went ahead and had a second child, with a vaginal birth, because a C-section would have been impossible with all the scars and the ostomy. My belly was already a roadmap! So, for the last 40 years, I've had infections that come and go. Sometimes they last for months... and then they disappear, for years. Such is life... Best regards

 

 

 

Oh my gosh, I really wish I would have had some of the information you have received when I was going through my poop terrors. Here goes... I developed a fistula while receiving radiation for a rare tumor that was between the rectal wall and the vaginal wall. A fistula formed; this was not exactly what was needed at the time, that is for sure. I was fortunate (I guess) that the fistula was very low in the vaginal wall, almost to the opening, which made it easier for cleaning.

The fistula stayed after the radiation was over and dealt me all sorts of hell. I was afraid to leave the house; this little darling had a mind of its own. It would erupt at any time with no warning, but mostly no control, none, so the elimination (which was always just liquid) would exit through the fistula and gush out the vaginal opening, and there just wasn't a muscle available to try to stop it! Not only was this embarrassing, it was painful, as radiated tissue is very sensitive (after all, the tissue had just been 'nuked' every day for 6 weeks!) I was unable to have a repair done due to the shape the radiation left all the surrounding tissue, and as my colorectal doctor advised, "radiation is the gift that just keeps on giving... sometimes up to 3 years after treatments have stopped." Good news was, the tumor was gone (YAHOOTIE) .......and THEN... POOP terrors!

So I prayed... a lot, hoping I wouldn't have a surprise mess before I got home from the grocery store, and as far as going out to eat, that wasn't happening! After the 2-year mark, I attempted 3 times to have a fistula repair done. I never had an issue with the rectum not working before the radiation, which left me to believe, or hope, that there would be a way to plug this new path that appeared, and I could just have a normal poop...???? I fought, I cried, I denied that my remedy would be the colostomy, until I just could no longer live with the control this little fistula darling had over my life. So in 2008, I went to the colorectal doctor to see if he would give this another repair shot. He advised with the amount of damage that the radiation had done, left the tissue permanently destroyed, not only the rectal part but the vaginal wall as well.

I had the colostomy done, and he had to do a lot of repair of the vaginal wall as well while in there. The fact I don't think was discussed with me... was how this would leave the vagina itself. (I will tell you this, not to scare, but please discuss all possible issues that a surgery will leave you with, or in my case, not leave you with) I at this time, still cannot have a vaginal exam without twilight sedation. The pain is just too much, the cavity that 'used' to be, is no longer, the normal elasticity, is no longer, and in my mind, sex is in the past. (I am single, so haven't approached this...) I realize that sharing the fact of not only having a colostomy but that vaginal sex was no longer an option... is really going to take a very special man to take all that on. and that's a whole new section to talk about!

I sometimes still have struggles with the whole 'ostomy' thing... then I remind myself, I am still here, I am finally healthy and strong again, I can be in public, and eat out, and very best of all, I have a gift of two wonderful granddaughters that have been born since all of the "poop terror"! And they are the light of my life! So, is it worth it? Yup, would I do it again? I didn't have a choice, so yup.

If you would ever like to visit by phone, just let me know, I will be open to any questions you may have, xoxoxo