Rectovaginal fistulas

I have one. It took forever to diagnose but I believe it started around 2005. I have tried to close it with antibiotics, Humira, Remicade and now I am on Entyvio. My GI was able to see it for the first time during a flex sig. a few months ago, they always said it was to low to be seen with the scope. Now that he has seen it he says it's to large to close medically. I did go back to the Mayo Clinic in 2014 where I had my original J Pouch surgery (in 1996). They would have done a flap surgery. I would have to have a colostomy bag to let it heal. They would try to take it down at some point maybe after a year but from my research the chances are high that it won't heal properly or another one could form. The surgeon I saw in my town of Las Vegas, NV won't touch it. She would just divert to the bag. I have always had loose stools and for the last 20 years I would go 10-15 times a day with leakage through the rectovaginal fistula. I get a lot of irritation from this of course. In July I had to go to the ER for fecal impaction. I have a stricture and my GI will usually dilate once or twice a year. I had him do this plus he put me on Linzess 72 mg (is all I can take or I am on the toilet with watery diarrhea and fistula drainage for over an hour) even at the 72mg I am in for about 30 min. I also have to take muralax and collace later in the day to be able to pass stool the rest of the day. I am so tired of dealing with all of this and there doesn't seem to be much hope for a better quality of life. I was originally diagnosed with universal ulcertive colitis. After the fistula developed they now say I have Crohn's of the pouch which is why it is so difficult to treat I am told.

I have a Pouch/Vaginal Fistula since January 2000… Pouch was formed in 1996 and takedown was in spring of 1997. A pouch pull down surgery at Cleveland Clinic failed and I’ve investigated enough to find out that the only way to repair it without a high failure rate is to get a new Jpouch surgery with 3 stages of surgery so I’m just making the best of it.

It's sad and devastating when we suffer from rectovaginal fistula, I've read so much that it is difficult to heal and even with surgery won't last because another fistula might form. I'm also hesitant because going to surgery a temporary ileostomy needs to be done. And I remember when I had the total colectomy and had to cope with the bag because it never stuck to my skin. Those 3 months with the bag were very traumatic. ☹️

Hello Unhappy,

People deal with medical issues on their own terms.  I've been in your shoes; it's a difficult decision to give up a j-pouch and go to a permanent ileostomy.  In 2007 after 17 years with the j-pouch and complications from a vaginal/j-pouch fistula, I had my j-pouch removed, my anus closed up, and now have a permanent end ileostomy. My ileostomy is on the left side of my abdomen just BELOW my waistband.  The ET nurse and I found the perfect spot together.

If a person is working with an excellent hospital and surgeon, they will have an easier time with this surgery.  I had my surgery done by Dr. Juan Nogueras at the Cleveland Clinic in Weston, FL.  My surgery took over five hours, but everything went well.  The only thing the surgeon faced was that after many fistula fixes that failed, my j-pouch had adhered to the vagina and he had to stop abdominal work and enter through the vagina to finish removing that last bit of j-pouch tissue.  Post surgery, I recovered quickly with no complications.  Upon discharge from the hospital, I had the best night's sleep I had had in years in the hotel before my husband and I headed home the next day.  My wounds healed up nicely within a 12 week period with no complications.  The wound below was sore but manageable and became even more comfortable after the stitches dissolved.  The abdominal area was sore but that wound healed up in no time too, especially after the staples were removed a week later (another long trip to Weston, FL).

I was so sick before I got my permanent ileostomy.  I worked 20 hours a week as an executive assistant for a CEO for many years--half of which time I had stool coming out of my vagina and anus non-stop.  My skin was raw and everything I ate caused me great pain when eliminating.  I suffered for a long time and continued my normal routine because I was afraid of the permanent ileostomy.  Why did I wait so long...

Now I have my life back again.  I eat anything, sleep all night, have more energy, gained weight, and there are days I just plain forget I have an ileostomy.  I was diagnosed with ulcerative colitis in 1972 at the age of 38, have had over 13 fistula repair surgeries and procedures, and finally received my permanent ileostomy at age 54.  I'm 72 now and life couldn't be better.  My husband and I are finally able to travel and have had lots of fun in our retirement.  He was my rock while I was ill.  Our lives are no longer on hold.  My ileostomy is 17 years old.

Yes, be afraid of the surgery.  It's okay!  Only don't let it stop you from moving forward with your life with a permanent ileostomy.  Your life will be SO MUCH BETTER.

I write this for all the people out there who are having lots of j-pouch problems.  I know there are thousands of happy j-pouch people.  I'm only offering these words to those out there who are suffering.  I just want them to know that a permanent ileostomy can be a life saver and a new beginning.

Caty