Staying positive when you have an RV fistula

[spacedog666]

Hi everyone,

I’ve had Crohn’s for a long time and I’m hoping someone might be able to help me to get a grip on the latest manifestation of my illness.

My butt has been a mess for the last couple of years – had a perianal fistula and recently had an intersphincteric abscess drained – not much fun but somehow I managed to cope with them. I had symptoms of rectovaginal fistula for 18 months before an EUA in Feb revealed I had two. One was able to be repaired and a seton has been placed in the other. I’ve now started Humira six weeks ago and was feeling quite hopeful – I was just so relieved to finally have confirmation of that there was something wrong and I wasn’t the crazy lady who really likes medical procedures. Now I’m really struggling to come to terms with life with a RV fistula. I know it’s going to be some time (months/years) before it might heal if it heals at all.

My self-esteem has taken a battering. I often feel dirty even though I'm obsessed about staying clean & anxious that I smell bad. I'm also single, split up with my last partner in Jan primarily because the fistula turned him off & I can’t say I blame him. I know sex isn’t everything but when I’ve got gas, poo & pus coming out of my bits, it’s hard to imagine that a normal relationship will ever be possible.

I’ve tried to talk to my non-Crohn’s friends but they don’t seem to understand why I feel so devastated. People try to be helpful but telling me to be positive & stay hopeful doesn't make the day-to-day reality any easier. I know that I have to do both those things but it's so hard at the moment – it just feels like there is no bright side.

I don’t really know how to reframe my situation so I can avoid slipping into depression. I’m hoping someone on the forum might have some wisdom they can share.

Hope it’s a happy day where you are.

 

[DJW]

Hi and welcome. I've had lots of fistulas, i know the frustration. I do know you're not alone. I'm sure one of the women will be along who can speak to you're situation.

Sending you my support. I really hope the Humira works

 

[MrsW]

Hi spacedog,
I know exactly how you feel. I had surgery on my rvf 2 weeks ago as no meds would fix it, only to find that 3 days later it had failed & I am now leaking poop worse than ever. Seeing my surgeon tomorrow to discuss my options now. I HATE the wretched thing with a passion & like you always feel dirty & sore & burning. I'm in NSW...feel free to pm me if you want to chat more. X

 

[spacedog666]

Thanks MrsW - as much I'm happy that someone else out there understands this wretched complication, I'm really sad to hear that your op didn't work - it's so hard to keep your hopes up when something like that happens and the saga keeps dragging on.

I'll definitely be in touch for a chat in the next couple of days as I'm out for a while tonight.

 

[Cosmojo]

I had a minor RV fistula and it healed up on its own w/o surgery- so these things do happen. It was pretty terrible, I found that pads, wet wipes, and frequent trips to the restroom to clean up makes you feel a little less gross.
Any man who deserves you won't be afraid to be with you because of your condition-best wishes!

 

[justbreathe8]

Hey spacedog, just wanted to say you are not alone. WHen I had all of my surgeries (I've had 5 so far) I get very depressed. I stopped answering phone calls because no one wants to hear someone who is down and out all the time. Whenever I did talk to someone, Id be crying and they would just tell me to hang in there, that I'm not dying. Well, half the time I felt like I was dying. Its hard because no one understands. But thats why we are all here!! This is an EXCELLENT place for talking with people who are going through similar things and feeling very similar ways. I wish the best for you!