Crohn's Disease Forum » Surgery » Fistulas, Fissures and Abscesses » Staying positive when you have an RV fistula

08-02-2014, 09:49 PM   #1
spacedog666's Avatar
Join Date: Aug 2014
Location: Melbourne, Victoria, Australia

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Staying positive when you have an RV fistula

Hi everyone,

Iíve had Crohnís for a long time and Iím 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 Ė had a perianal fistula and recently had an intersphincteric abscess drained Ė 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. Iíve now started Humira six weeks ago and was feeling quite hopeful Ė I was just so relieved to finally have confirmation of that there was something wrong and I wasnít the crazy lady who really likes medical procedures. Now Iím really struggling to come to terms with life with a RV fistula. I know itís 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 canít say I blame him. I know sex isnít everything but when Iíve got gas, poo & pus coming out of my bits, itís hard to imagine that a normal relationship will ever be possible.

Iíve tried to talk to my non-Crohnís friends but they donít 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 Ė it just feels like there is no bright side.

I donít really know how to reframe my situation so I can avoid slipping into depression. Iím hoping someone on the forum might have some wisdom they can share.

Hope itís a happy day where you are.
08-02-2014, 10:20 PM   #2
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DJW's Avatar
Join Date: Jul 2013
Location: Ontario

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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
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08-03-2014, 12:53 AM   #3
MrsW's Avatar
Join Date: Jul 2014
Location: Australia
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
08-03-2014, 01:07 AM   #4
spacedog666's Avatar
Join Date: Aug 2014
Location: Melbourne, Victoria, Australia

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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.
08-03-2014, 06:21 PM   #5
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Join Date: Dec 2011
Location: San Antonio, TX

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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!
Currently on:
wellbutrin, levothyroxin, propranolol, B12, multi vitamin, naratriptan, xanax

In the past:
Humira weekly- didn't work
Remicade every 6 weeks- had lots of side effects after being on it for 4 years
Prednisone & all steroids- I get manic episodes so I can't take
Pentasa- didn't work
Imuran- not currently using but did seem to work
MTX- stopped, my kidneys were getting lots of infections

Just trying my best to get through graduate school
08-07-2014, 06:47 AM   #6
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Location: chicago, Illinois

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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!

Crohn's Disease Forum » Surgery » Fistulas, Fissures and Abscesses » Staying positive when you have an RV fistula
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