I can only tell you my experience. I had a flap advancement repair and a diverting ileostomy about a year ago to allow a recto vaginal fistula. I was told that it could take awhile for the fistula to heal. While I had the diverting ileostomy there was discharge but I was assuming it was from estrogen inserts that I was using twice a week.

Last December the surgeon took a look under anesthetic and he determined the fistula had healed.

Eight weeks ago I had the ostomy closed and the j pouch reattached. It seemed to be just fine until six weeks after surgery. It clearly did not close and I have a considerable amount of stool in the vagina.

I don't know if I should even be sharing this with you as it your fistula may well heal. (I'm assuming you still have the diverting ileostomy?)

This was my 2nd unsuccessful flap advancement and more surgery would likely cause more harm in terms of scar tissue, adhesions, etc. so my situation now is to try a few months trial of Humira to see if it will heal and, if not, it will be a permanent ostomy. Neither the surgeon nor the gastroenterologist think the Humira will work as my diagnosis has remained UC vs Crohn's but I guess I'll give it a try. 

Again, I'm sorry to be telling you this and your situation could be entirely different from mine. I'm sending lots of love to you LoriB.

JHENDRIX thank you so much! It is good to hear from anyone that has had this surgery and I certainly appreciate you sharing your story. I am very sorry that you are having to go the Humira route. My gynocologist had mentioned sealing the hole from the vaginal side so if this does not work I am definitely going to discuss that option with him as well. I can empathize with that defeated feeling. I will keep you posted. I see the surgeon this week and he will start doing some tests. At this point I cannot forsee him saying that it is healed which means two more months with the ileostomy. I suppose it is just going to take time and a lot of faith in the Lord above. I will keep you in my prayers.

Hello, I also have a recto vaginal fistula for a while now with the j pouch. I have been on medication to try to heal it but it doesn't seem to be closing over. I am wondering what the outcome was for you ladies?

If there was any success with healing them or if a return to an ostomy was the better route. I'd like to keep my jpouch but concerned about pelvic inflammatory disease (long term) if there is chronic leaking inside which is hard for doctors to detect.

Thanks,

Juliana

Oddly, I was just thinking about my fistula when this notification came in. I was putting leftover carrots away and felt grateful. Little pieces of carrot used to come through the r v fistula fairly regularly. The 2 surgeries weren't really successful but at least there is a bit of a filter now! Ha ha. Too much info I know. But the timing just struck me!

(I've been referred to a surgeon in Toronto who is apparently pretty creative so she may have a different idea. Although I'm still not in a rush to travel and I imagine she is backlogged with surgeries)

I continue to be hopeful but for now, I'll not go back to the ostomy until there seems to be no choice

I see that my original post mentioned trying Humira. As an update, I had my first injection of Humira and within 2 weeks was very very sick. 'Lupus like syndrome' so I didn't continue. That was a few years ago and still have a bit of nerve effects. Following that,  I saw Dr. Chen who was still in Cleveland at the time and  was doing a procedure with clips. It was not appropriate for me due to the position of the fistula but, if possible. a consult with him might be more successful for you.  I think he's in New York now?

I'm hesitant to wish you luck as any luck coming from me seems to on the bad side! Ha.

I am trying to figure the replying out...this is a test.

Lori B...If you're wondering if we can see your posts, then yes we can

Juliana,

Hey! Wow, what a journey I have had since this post. The good news... FISTULA COMPLETELY GONE! It is absolutely possible but not through the medical community. Long story short, I ended up at the Cleveland Clinic and had two additional attempts to correct it through surgery. One long and very involved surgery where my pouch was removed, flipped and put back in. It failed. Then another less invasive surgery, which also failed. So after 16 months of the medical hamster wheel, I said enough of this, I'll figure it out on my own. I had my ostomy reversed and began looking at natural healing. I found Jini Patel Thompson and her book Listen To Your Gut. (You buy it off her website, also named listen to your gut.) She had a specific protocol for healing a RVF. When I read the following, it hit me like a ton of bricks "Fistulas are usually formed as a result of chronic infection...the body can tunnel through tissue, muscle and even bone to create a drainage hole...keeping this in mind, it doesn't do any good to just heal the tissue or surgically close the fistula path/hole. Because if the underlying infection is not resolved, the body will just create another hole or two or three." THIS WAS ME! Over and over again. Modern medicine/surgeons, have ZERO clue why are sick and all they want to do is treat the symptom, not the cause. Without treating the cause, the symptoms NEVER go away. I followed her protocol to the T and it worked. Yes, there are dietary changes and supplements you will have to take but it's easy and not expensive. BUT, she makes it very clear that you must deal with your emotional issues or it will not work. It is mind, body, soul. There is no healing one without all three. I had a naturopath, I did EFT tapping (Reiki), craniosacral treatment, myofascial release, accupuncture...I am sure I am forgetting something...ha ha . Talk therapy is ok but you MUST do the body therapy. Today I am fistula free and I would not trade one minute of that experience b/c it lead me on the journey to bring me to where I am today. It was my "dark night of the soul". I found myself through the natural healing and it was the most amazing process of my life.  I wish it for everyone. I could talk FOREVER about this stuff b/c it is my passion now. Please feel free to reach out to me if you want more details...loribaynerealtor@gmail.com

Bottom line, you CAN heal! You DON'T need all the drugs! Your body is amazing and it can totally heal itself if you get out of the way. YOU HAVE GOT THIS!! Chase it with a white hot passion that you know there is NO DOUBT you will get better. Take your power back...it has always been in you hands anyway.

Much love!

Lori

Hi Lori,

Thank you so much for this reply! It's so nice to hear positive, empowering messages. I have contacted Jini Patel through her website and hope to get started asap.

Thank you so much for sharing and I will be in touch via email.

Hi Juliana. Please let us know how this protocol  goes for you. I took a hopeful look at it as well but I think it may not be appropriate for me. My fistula was caused by a 'mishap' in my jpouch surgery and not inflammation. I'm told it would require a 'structural' repair. Still, if it has an effect on thickening the stool, it may still help me. I'm curious to know how it progresses for you.  It is good to have something to be positive about. Good luck to you.

Hi, yes I will keep you updated! I have started using the Natren brand probiotics and Wild oil of oregano and will daily for 3 months to give it a solid chance. I got the book Listen to your Gut by Jini Patel Thompson. It's quite informative. I will update in a few months.  Wishing for healing and miracles for good quality of life to everyone.