4 years to me is a lifetime.

I just want to start off by saying that I have not been diagnosed with any form of IBD or Crohn's, but I came here for support for similar symptoms. Four years ago when I was 14, I had a sudden severe bowel impaction that my doctor ignored by sending me home with stool softeners that didn't work. I continued to tell him " I CAN'T GO!" and finally after 16 days of losing a lot of weight and making myself look like those poor kids you see on the commercials in foreign countries who haven't eaten in forever...he finally hospitalized me to give me a large "soap suds" enema which felt like the most amazing thing after it was all over with. After that, I had multiple tests such as MRI, Upper GI with barium swallow, multiple x-rays, tons of bloodwork and a colonoscopy to rule out anything wrong, I came away from it all clean as a whistle. Except for one minor detail... about a week after I came home from the hospital I noticed that I was leaking liquid stool into my underwear. I went to the doc and asked him and he told me that my colon could have been stretched from the impaction and to just wait it out with stool softeners. Well here I am, 4 years later..nerves shot and anxiety through the roof. I told him that ever since I had the colonoscopy, I had some bright red blood on the toilet paper after bowel movements and he thought it was just hemorrhoids. After demanding him to violate me and give me a rectal exam, he found an anal fistula that was bleeding. He referred me to a surgeon and they're going to do an examination under anesthesia on tuesday next week first to see if it is for sure a fistula and not some other thing called "pilonidal disease" which they don't think it is. They think I got this fistula from an infection due to the long term impaction. I literally had a piece of poo stuck inside my rectal opening for 16 days. Anyhow, I just wanted to share my story here. Because of all of this, I had to drop out of normal school in 8th grade and be homeschooled. I've lost touch with almost all of my friends and I've developed social anxiety from this. The surgeon said if the fistula is low enough, he will "de-roof" it? and lay it open so it heals. Thinking about it makes my butt quiver. He said though, if it is higher then he will want to do further tests for Crohn's or IBD and refer me to a specialist. Other than that odd impaction when I was 14, I've never had any of the symptoms of Crohn's or IBD. I guess I'm just really paranoid that this isn't going to be the "simple fix" that the surgeon says it will be. Dealing with anal leaking for four years when you're only 17 and a half years old seems like a lifetime. I'm mad at myself for not taking care of it sooner, and I'm mad at my doctor for always refusing to do a simple rectal exam instead of telling me to do bogus things like exercise more and use more fiber. I sure hope this surgeon knows what he's doing when he cuts me open next tuesday. I'm more scared than I've ever been in my life about this. Sorry if this all sounds dramatic, I know a lot of you have way worse problems than fistulas, but to me...this is my life. I can't even remember what it was life to feel comfortable really. I crave the life I had before..but I know even if this surgery works I can't imagine how I can recover emotionally without professional help.

Hi Travis and a very warm welcome to the forum. Glad you found us. I'm sorry to hear about the trouble you've been having with the fistula. Unfortunately it's taken a lot of us a long time to get the right diagnosis and to learn that not all doctors are right!
If you pop over to our Fissures, Fistulas and Abscesses subforum and have a browse, you'll find information that might help and others who are facing similar symptoms and the surgery that has been suggested for you.
I hope that it goes well and that 2012 is going to see you get some relief from what is a very distressing condition.
Please keep us updated as you go and well help in any way we can.

You poor thing! I can't even begin to imagine how your life must have been like for the last few years, especially being so young.

I used to have absolutely debilitating anxiety/agoraphobia thanks to my extreme fear of getting diarrhea and not being able to make it to a bathroom. For almost a year I literally wasn't even able to leave my property without having a full blown panic attack. I had to stop working and I had no social life to speak of. I ended up talking to a psychologist and working through my fears with cognitive behavioral therapy and it has helped so so so much. It's about 3 years on and I almost can't even believe I lived my life that way. I still occasionally get anxious in places where I know I'm not super close to a toilet but I think that's just another thing to think of with IBD and I'm happy with the way my life is. I think that seeing a professional about how you're feeling is a good idea. Never be afraid to seek assistance and advice from someone who is trained to help you out.

I also sincerely hope your surgery goes really well and that it gives you back your health and quality of life.

Hi Travis and welcome, you have definetly come to the right place It is shocking at how many times I hear of docs ignoring what you tell them and then things having to get to such a bad state before they take any action They never realise how isolated this makes you feel and sometimes I can't help think that they sometimes use your age against you. At the very beginning of my symptoms one of the GP's wanted my mum to search my room for laxatives, I was 16 and being a female I was obviously making myself ill on purpose in order to lose weight - IDIOT! I am pleased to see that something is finally being done for you and will keep my fingers crossed that this gets things sorted :hug:

Thanks guys for the kind words. I'm honestly really scared right now. I've had a lot of breakdowns the past few years and I can't tell you how lonely I've felt. I know I shouldn't regret things, but I do regret not being strong enough to tell my doctor to check things out. I was scared, and even though things are supposed to get taken care of, I'm really dreading this surgery. I've read stories on the internet from people who have had them and they say the recovery is pretty painful. I guess I'd rather suck it up and have a few weeks of pain rather than go through the emotional and social distress for the rest of my life and not get it taken care of. I'm on my journey to a better me...hopefully. I will post how everything is going after my surgery on tuesday. My thoughts are with the rest of you on here who have things way worse than a fistula.

Wishing you all the very best for Tuesday x

I have one more question, even though I have no family history of Crohn's disease or anybody with IBD or even IBS in the family, I heard that fistulas are common in people with Crohn's and was wondering if after my surgery, I should get tested for Crohn's? I have no symptoms really, no cramping..pretty normal bowel movements even though I leak because of the fistula. I had every test in the book 3 and a half years ago, including that colonoscopy..I've kinda become a hypochondriac because of my problem and am thinking of asking my doc for another colonoscopy after I deal with the fistula.

Once the fistula has been sorted it couldn't hurt to ask about a colonoscopy. Just bare in mind that if you then are doing well and don't have an symptoms indicative of crohns the doc may be reluctant, however if you fell strongly about this keep at them about it. Unfortunately when these tests are done you nearly need to be at your worst because then the exam shows all the nastiness that is going on.