Guest Post: I have a fistula

So as an IBDer we deal with a lot of shit, literally. But there is no feeling worse than dealing with shit that comes from somewhere it’s NOT SUPPOSED TO, which is what a fistula is. A fistula is an abnormal opening that connects two organs, causing drainage and air and pus and god knows what else to come through whenever it wants. I have a recto-vaginal fistula. So you can only imagine how THAT feels. Having a fistula is not only gross when it’s at it’s worse, but can also be painful, depressing confidence crushing. I know that for myself, personally, it leaves me feeling almost less-than-human. I’ve had 3 fistulas since my diagnosis of ulcerative colitis (which is now Crohn’s) in 2004 and I’ve tried every procedure and medicine out there for the damn things. I’ve had seton drains, vaginal mesh, Graciloplasty surgery, fistula plugs, the advancement flap repair, have been on Imuran, Remicade and am now on Humira to try and keep these damn things at bay.

Granted, since I started Humira my fistula has remained calm and even closed a majority of the way. But, after having a plug surgery last week to get the thing to ‘fully’ close I am having more drainage than I had BEFORE the surgery and am back to feeling pretty low. With this disease we go through highs and lows, what ifs and ‘should we?’ and constantly question our next move. I have a hard time planning ahead because I don’t know if I’ll still be able to do said activity once the day actually comes, and with a constant draining fistula, it makes these decisions even harder. The fistula affects any regular activity: standing, walking, sitting…etc. If I do any of these things too long I can expect to suffer the draining, burning consequences.  Not to mention sex. Sex is a whole other subject.  I’ve kept my fistula issues a secret throughout most of my relationships but as I’ve gotten older I’ve juggled with how to let my significant other know what is going on, with as little detail as possible. Regardless of my constant struggle with fistulas I have managed to: graduate from college, hold a full time and extremely demanding job at an ad agency, run in a 5k, travel to various cities and states, and workout. Basically what I’m saying is there are times when dealing with fistulas is rough, sad, frustrating, gross and painful. But I’ve realized that life continues to go on and it’s all about learning how to deal with it one day at a time.  Ok, brb, got some shit to tend to.

Please leave a comment

  1. Rosina Says:

    You are so brave, brave to share it, brave to deal with it (I know you have to but some people would just fall apart) I can’t begin to imagine what stresses you must have on a daily basis. I just hope it sorts itself out soon!

  2. Jon Wright Says:

    You really are brave to have to deal with all the surgeries you have had so far. I commend you for that. I’ve been suffering from Chrohn’s for over 6 years now and I’m one of the lucky ones that can control it with dietary changes and medication. So far no surgeries, but I couldn’t afford them if I could. My heart goes out to you. I also run a blog at http://www.chrohnsrecipes.com for those people that really can’t afford healthcare & need information on dealing with different IBD’s through dietary changes. I wish you the best of luck.

    - Jon, Owner
    - http://www.chrohnsrecipes.com

  3. Nat Says:

    I too have a recto-vaginal fistula. I’ve gone overseas to a ‘specialist’ team to have vaginal flap repair and it still didn’t work but we only found out after my 2nd reversal surgery a month ago. Yesterday I was told that I will have to go back to the bag and I need to get my head around the fact that it may be for good.
    My surgeon did mention a surgery which is not done that often anymore where the Stoma is in the inside and you empty it via a catheter a few times a day. Has anyone else heard of it?
    Also has your fistula affected your sex life? I’m in a new relationship and have not slept together yet but I would like to but I’m afraid. Has your fistula leaked during inter ours before?

    Thanks,
    A very confused and overwhelmed Nat
    (Subtotal colectomy 2007, pouch formation 2008, Stoma closure 2009, ostomy formation January 2012, recto-vaginal fistula repair Sept 2012, Stoma closure Nov 2013, recto-vaginal fistula repair Nov 2013, recto-vaginal fistula Dec 2013).

  4. Alicia Says:

    Did they do barium tests before they reversed you, Nat? My surgeon double and triple checked that the flap had healed before reversing me. And yes…I’ve looked into that. It’s called the Koch pouch. I’m not sure i would opt for one of those over the bag, though. It hasn’t affected my sex life too bad really. I’ve dated very understanding people through the years I’ve them.

  5. Terry Says:

    Hi,
    In response to the people that have mentioned being sexually active with a rectovaginal fistula, I am curious as to how you approached the subject with a new significant other??
    So frustrated with this issue….I feel like a freak of nature, and I’m afraid he’ll think I am too…..
    Thank you for your thoughts/suggestions!!
    Terry

  6. Alicia Says:

    Hi Terry!

    When I developed my first fistula I felt like a freak, was ashamed and never knew how I’d tell someone what was going on. As I got used to “living with” my first fistula and figured out ways to keep myself clean I didn’t even feel the need to tell the first person I dated that I had one. After that was repaired and then came back I was with someone new so all of the surgeries and hospitalizations happened while I was with this person so I told them snippets of details and again they didn’t run away screaming. Currently, I am dating someone and have been living with my third fistula for over two years. Sex has not been an issue because I generally ‘know’ if its going to happen so i make sure to go to the bathroom and clean up down there as much as possible. How much is coming out, Terry? Do you have a seton in?

  7. Terry Says:

    Thank you so much for your response:-)
    This is such a bizarre and embarrassing subject, that I just don’t feel comfortable talking to ANYONE about it!!
    I only have one, that I’m aware of. I do not have a seton…..I’m not even sure what that is.??
    When my GI surgeon told me it could possibly get worse with surgery, I opted to try some homeopathic treatments and just live with it. I’ve had it for about a year now. There is pretty much constant drainage, but it’s not much, and I usually just keep a tampon in….

  8. Terry Says:

    I should also mention, I have a jpouch. Which is a whole other topic of embarrassment when it comes to dating…..

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