Feeling lost with a fistula

Hey guys, I am hoping that some of you might have experience or be able to answer my question about this. It's been a rough year so far. I was married in December (lol, that was good! ). In February I got c. diff, which caused a flare and I was really sick and in the hospital for a bit (scared my poor new husband). Then all of the erosion from that caused a perianal abscess in between my legs between my vaginal and anal cavities (sorry if any of this is tmi, I've gotten used to having to be open). This was in April. It was cut and drained, but then I got c. diff again that next week from the ER visit, and then two weeks after getting released that time I was back in again, only this time the abscess had healed but became a rectovaginal fistula.

At the time, I was on Imuran and Asacol. My doctors wanted me to go on Remicade, but I was moving the next month to another state and wouldn't have insurance in that state until September (this was May). So we put in a draining seton. However, I got stuff worked out with insurance a little bit and we agreed I would fly back to Denver (where we used to live) and get the 3rd infusion, since my insurance there is good until August 31 (I'm a teacher, so I'm covered until the end of summer). So I had the seton removed the day after my 2nd remicade infusion (a little over a month ago) and the day before we moved from Denver. Then I just had my 3rd infusion a week and a half ago.

So here's my question: when I got the seton removed, my doctor said to hold off on intimacy and even tampons for four weeks at least to let it heal. That time came up, but I'm not sure if I have made things worse or not. I'm a bit sore in general, but I've always been small. There's been bleeding, but I also started my period this weekend (although I hadn't had one since February because I've been so sick). I can't ask my doctor because I'm in a different state and I still can't get insurance here until September 1. How long does it usually take these to heal? I'm not having bad discharge like I did when I first had it. I had a mild fever yesterday (99.8 F) but it's gone down. What signs should I be looking for and what is normal stuff? Please help! I'm feeling a little lost and alone right now. It was scary for me to leave my doctors.

Post Edited (scifigal2k) : 7/10/2012 11:15:02 PM (GMT-6)

Hi scifi gal, I totally understand, Im so sorry your are dealing with this. I have an anal fistula but not in the same area however maybe some of my experiences can help. I will be starting humira to try to heal it but am currently on pred and it is not been acting up. I can say that I had bleeding here and there when I started the pred so it probably takes some time for meds to kick in and I think remi takes 3 months but I could be wrong. The fever sounds like the inflammation fevers I get usually the day after I have had any kind of physical activity even doing alot of walking. To me it means that the crohns is still active and the meds haven't kicked in yet. Personally, I would watch out for unusual discharge, a fever higher 101 or to be cautious 100.8 and pain.
I know that lost feeling, thats exactly how i was describing it to myself because things feel so unpredictable. I often fear doing anything that I have had a fever after including going out with friends where i will be active most of the day. I hope you find relief soon

I jsut wanted to express support for you on this.  I was lucky and my only (I say that thinking another one may be found in a few weeks--denial!) fistula was perirectal.  I understand the sensitivty issues though.  My fistual was in year 2 of dating my now husband (3 years of dating--a different surgery each year and he still married me!).  Even with a different location, it was tender in all areas for some time after the seton came out.

I am thinking you may just be pushing it a bit in your timing.  Remember to give yourself longer to heal...it always seems to take a little longer tha I am told I think.  If the fever persists, check it out with your doc.  I know I spike mini fevers often so I sort of brush them off.

I just want you to know there are others that can understand if not completely in your situation.  Keep in touch to let us know how you are doing.

Hi scifigal2k,

I have a rectovaginal fistula, that ended up having 4 branches, and I've abscessed twice since 2009. Between May 2011 to May 2012, I've had no less than 8 surgical procedures to figure this mess out. I've tried fibrin glue (fail), two LIFT procedures (one tied off a branch, the other failed), and 2 plugs (both failed, they were the porcine kind, not synthetic). I'm up for rectal advancement flap surgery in November.

Having a fistula of this type can be awful, but try not to let it get you down! The main issues that I deal with (other than a constant fear of abscess) are what I call "blowback" after a bm, having to wear a pantyliner all the time, and irritation when I have a bad bathroom day. Other than that, it's business as usual.

If you are still having drainage, you might consider keeping a tube of Desitin or Balmex around. It can really help coat outside skin if the drainage causes irritation. On the fever subject, the only time I ran fevers was when I abscessed, and then only when I was on the verge of toxemia. I'm kinda odd that way! :)

Best of luck to you, and I hope you can get this fixed!