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.
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...Doc removed the little bit of rectum left and sewd 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 ok 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 acceptence of this situation.¬† LIFE is GOOD, and for me, Life continues and I am so very grateful.
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 , thought all was well.
Married, and had my first child....and that's when the infections started.¬† Could not clear up 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 not able to detect the location.¬† Because the infections came and "went", they¬† thought 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 re arranged 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 info you have recieved, when I was going thru my poop terrors.¬† Here goes... I developed a fistula while recieving 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 delt me¬†ALL sorts of hell.¬†I was aftaid to leave the house, this lil' darlin' had a mind of its own.¬† Would errupt any time with no warning, but mostly NO CONTROL, NONE, so the elimation (which was always just liquid) would exit thru 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 embarassing, 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 Colo rectal Dr. 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... alot, hoping I would'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 lil' fistula darlin' had over my life.¬† So in 2008, I went to the Colorectal Dr. 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 permenantly distroyed, not only the rectal part, but the vaginal wall as well.¬†
I Had the colostomy done, and he had to do ALOT 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 vigina itself.¬†( I will tell you this, NOT to scare, but pleeze 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 tiwlight sedation.¬† The pain is just toooo 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 thats a whole new section to talk about!
I sometimes still have struggles with the whole 'ostomy' thang....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