So I've researched the other fistula posts and wanted to ask how many people have success in clearing up their fistulas.

I had my proctocolectomy in March '09 and ileostomy reversal in June '09. In December I started having terrible pain and had a CT Scan and MRI which revealed nothing. Finally at the end of the month, I discovered an abscess. I went in for surgery and my doctor found a fistula from the pouch to vagina where it abscessed. He put in a Seton drain and a month later everything looked healed. I wanted him to do the plug surgery but he didn't want to. He wanted to wait another month. Well after yet another month, I was having horrible pain again and I went in for surgery where he found another fistula. The previous one had gotten bigger so he replaced the drain with a rubber tube.

My doctor can't explain why this is happening but does not believe it's Crohn's because I dont' show any other symptoms.

I know some people live with these drains but I cannot deal with it. It's horribly painful, I'm literally pooping out of my vagina (before it was just leakage), and sex is out of the question.

Has anybody had success with the plug surgery? Have you had to go back to a temporary ileo?

On top of everything, my parents want to take me to Cleveland Clinic to get a 2nd opinion or to see if they can work some sort of miracle. I don't know if that will help.

Anyway, I just wanted to get people's thoughts.

Thanks!

Oh, no! I'm so sorry about your fistula experience. I feel your pain.

I'm sort of trying to find the same answer as you. I've had two recto-vaginal fistulas and have been dealing with them since 2006. I wear a pad at all times because sometimes my leaks are pretty bad. I'm usually ok for sex, only not when the labia gets really bad from the drainage. Mine get worse when I have a stricture and hard time fully emptying the pouch. When the consistency of the poop is not liquid, I also find I'm so much better. I eat the Metamucil wafers with my breakfast and this makes a big difference for me. I've had Metamucil every day since my surgeries in 1999. I also do sitz baths from time to time to keep everything very clean and they help with the pain (at least for me).

I refuse to even discuss another ileostomy. But I have heard of this option, but I don't want to go through that surgery again.

My doctor is now suggesting Remicade (IV treatment) for my fistulas because it has been very successful to close fistula openings in Crohn's patients. Is this an option for you? I'm trying to get feedback from others on this and just put up a post yesterday about it.

I had the setons in, then the glue. It held for a few months, but then deteriorated after time. My surgeon gave it a 30% success rate. I also had the surgery to stretch tissues from the pouch (or maybe from the rectum?) over the fistula hole. Again, held for a few months, but then deteriorated.

I've been on Flagyl for a long time, off and on, to help stop the infections that come along with the fistula. At this point, I might be ready to consider the Remicade since it has a success rate for closing fistulas and you only need every 8 weeks (vs. the Flaygl 2x a day!).

I wish I had a better picture to paint!

God bless!