Crohn's Disease Forum » Surgery » Fistulas, Fissures and Abscesses » Rectovaginal fistula repair failed again.

02-23-2016, 01:46 AM   #1
lizzy's Avatar
Join Date: Jan 2011
Location: United Kingdom
Rectovaginal fistula repair failed again.

guys. I'm feeling a bit crap because I had my 3rd or 4th fistula repair done on Thursday and I got some air and faeces back through thehole today meaning its failed. I find the condition very troublesome as it is really a form of incontinence and it really interferes with how attractive I feel. I don't have a lot of confidence about sex anyway and the thought of having to negotiate this with someone is really very difficult for me. This means I have put off tryingvto find a partner "until this is fixed" but this seems unlikely to ever happen. I'm relatively young and it is by no means the worst problem I have had. I fought with multiple strictures for several years which nearly did me in a couple of times. I really need to get some perspective on this but it difficult when its such a taboo subject. None of my friends know I have it, it makes me want to scream when they complain about not being able to find a boyfriend!
Is anyone else living with a similar thing? How do you cope?

Lizzy x

02-23-2016, 02:50 AM   #2
fuzzy butterfly
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Join Date: Jul 2015
Location: manchester, United Kingdom

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Hi lizzy, im sorry you are having to deal with this. I havent so i cant offer advice, but do want to send you my support. It most be really awkward for you and frustrating. Never give up hoping that it can be sorted out as i sure it will. May take a while but hang in there girl. Big hugs 💕💕
02-23-2016, 12:50 PM   #3
Join Date: Dec 2014
Lizzy, You may want to learn about KsharSutra. Read some of my posts on this forum and also go through my blog for information. It is possible to treat this, if you have the will to journey to India.
Abscess Fistula Sufferer (11/2013 - 6/2015)
My anal fistula story -
02-27-2016, 06:34 AM   #4
Silverbird's Avatar
Join Date: Oct 2015
Location: The Netherlands

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So sorry to hear that, Lizzy! I know how hard it is to have something like this, mentally, also. (I don't have rectovaginal fistula, 'only' perianal, but still).

I was quite 'lucky' I was already in a relationship (though only for a couple of months) when this happened to me (I was 18). He's always been as understanding as possible and isn't really 'scared' and not at all 'disgusted' by it (though he still refused to buy me pantylinders, but I guess that's just a guys thing ). By this time, we've been together for about 6.5 years

I have told my friends, right away. That wasn't easy to explain, but I know I could because they're really understanding, and one of them actually studies medicin, so yeah.
I do think - and I can't stretch this enough - that it's really REALLY important to have people in your life who can support you. Family, but also friends. If they're really good friends, they'll understand. And I know this sounds really harsh, but if they don't, how good of friends can they really be?
A relationship, and sex, is another matter. This is something you need to feel comfortable with, so if you don't want to 'look' for a relationship while you still have this problem, you shouldn't. But having no romantic/sexual relationship might make it even more important to have friends around you who you can talk to. It's not like my friends are treating me any differently, but at least they know, and sometimes they ask how I'm doing under the circumstances, and I don't feel like I need to have 'secrets' from them.

I hope this helps I felt SO closed off when I didn't tell the people around me what was going on with me. OK, I must say: the people I study with, my teachers/supervisors etc. only vaguely know what's going on (most know I have Crohn's and I have to visit the hospital quite often, but most of them don't know about the perianal fistula, that's just tmi ).
But being a bit more open than I was only a year ago (when I didn't tell anybody anything, except my family and closest friends), really helped me getting through some stuff
Crohn's disease since Dec 2012 | Perianal abcesses & fistula since June 2009

Remicade 300mg/6weeks | 6MP 25mg & Allopurinol 100mg every other day
02-27-2016, 09:03 AM   #5
Lisa's Avatar
Join Date: Apr 2010
Location: New York

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I'm not familiar with your treatment history, have you been on any of the biologic medicines yet? Remicade has allowed fistula to heal for many people, including me.

30 plus years and counting with UC/Crohn's!
on remicade since 11/05

While my experiences may not be what everyone has had- I feel it is worthwhile to share any and all experiences that may be beneficial to others.
02-27-2016, 12:55 PM   #6
Senior Member
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Join Date: Jan 2016
Location: Fiji
I have 3 or 4 R/V fistulae. Yes, it's horrible. I can't have surgery because of my cardiovascular status, so I do feel for you that yours has failed. What medication are you on for your Crohn's? Remicade and Humira are known to heal fistulae. Humira was my silver bullet. I loved it, but had to be taken off of it. Now I have all of these problems again. Sorry you're dealing with it.

As far as a coping mechanism.....I don't know if there is an effective one when you're having these issues. If there is, I'd be interested in it, too.
End Stage Severe Fistulizing Crohn's Disease (Diagnosed 40 years ago)
MS-like demyelinating disease (Humira induced brain lesions)
Spinal Stenosis cervical (with spinal cord flattening)
Spinal Stenosis lumbar
Severe Pulmonary Hypertension
Right heart failure

Crohn's Disease Forum » Surgery » Fistulas, Fissures and Abscesses » Rectovaginal fistula repair failed again.
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