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Guest Post: I have a fistula

Posted Nov 26 2013 11:00am

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.

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