February 15, 2016 Fecal Incontinence
Country : Italy 

Hello to everybody. I bumped into this website in one of the several moments of discomfort of my life. I was born with myelomeningocele, spina bifida, so I've been dealing with fecal incontinence my entire life.

I'm actually crying reading some of your posts, for the first time I feel someone is considering this problem as a burden that sometimes is just unbearable. I'm a 23 yr girl from Italy and I would like to share my story with you, hoping it might relieve someone else's pain, as your stories just did with mine.

As I said I was born with spina bifida and Currarino syndrome, I spent my infancy in and out of hospitals, but it wasn't awful, it was an experience that I will jealously keep in my heart. Fecal incontinence is the only disability I have, I've been so lucky not to have my legs injured! The real problem came with my early adolescence, I was literally thrown in a world of “normal” people, and I wasn't prepared, at all. The impact this disability had on my personality was immense, massive. It changed me, completely. I became cold and I just hide myself from everyone, the burden I wasn't prepared for was simply overwhelming. My parents gave all the medical care they could, but they weren't there when I needed them most. The loneliness which became an indelible part of me still makes me hold my breath so many times. I was a brilliant student, I then decided to apply to med school, probably because of this special bond I always had with hospitals, I think. it was during the first 3 years that the turning point came off: bulimia nervosa. I call it turning point because after some time I understand that the infinite struggle against bulimia was actually me, me trying to escape from the wall I built around myself, escaping from the immense ocean surrounding an island. They have been the most horrible years of my life, but I also had the courage to seek some help. I never talked about this disability to anyone, my family cannot even image how deep is the solitude I dug into myself.

Two years ago I started psychotherapy, I'm really better off now, I mean, bulimia is under control, but fecal incontinence isn't something that I can always control. I became aware of the fact that the thing I am mostly afraid of is being alone, I just realised I want to learn to love and to be loved, and this is something that I always kept out of my life, because I was ashamed, I felt inadequate, dirty, guilty (for letting me be overwhelmed despite I've seen people going through worse). I'm 23 and I've never had a boyfriend, I was never even able to tell my closest friends the real reasons why I never wanted to get close to a man. But now I want this to change, I injured myself, a lot, now I want to take care of me, but still I don't see how I can let someone else in this messy life.

Thank you a lot for sharing your stories, it really helped me realising that someone else feels the burden that we have to live with. I wish you all the best.

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January 23, 2017 07:30 — Jennifer Schneider

You are so not alone. I too have Spina Bifida, although it sounds like your case was much more severe. I have full use of my legs. I have neurogenic bladder and bowel. With both, I had full incontinence as well as the inability to empty when I needed to. My bowels and bladder just did whatever they wanted, whenever they wanted. It's been a miserable journey, but reading stories like yours help me feel connected and know that someone understands. Your pain is not for nothing. You are helping me right now to not feel alone. !0 years ago, I had surgery to enlarge my bladder and then create a stoma so I could catheterize thru a hole in my abdomen. 2 years ago, I had a colostomy to help w/ the FI. It doesn't help w/ the constipation part of things, but at least accidents are out of the picture now. Please don't ever think you are alone.... Sending you gentle hugs. jenrs13