My life battling with bathroom issues

Not all of Chiarians have bathroom issues and some that do, do not have Chiari, I am one of the people that dose  and today I want like to share with you my life battling with bathroom issues.

So this is my story - As I always say if it's happening to me I can't be alone.

My whole life I can not remember not having an issue going to the bathroom, going more then a few weeks with out a BM was not uncommon for me. The thought of going to the bathroom made me cry, the pain that was in-front of my feet as I opened the door was overwhelming. When I was a child it was so hard to go because we did not talk about these things and I took so long that I felt a need to hurry. As a child and through my twenty's I thought it was normal to wait to go or hold it for so long. But the truth was when I went it was not just the issue of being able to go and push it was the pain in the back of my head I would just quit. This was normal for me and it has carried on to today as I cry sitting in the bathroom wondering what is wrong with me.

Each GI doctor I went to made me feel more alone as they told me it was the medication I took and did not listen to the fact I have had this my whole life. The only way I knew how to deal with it was to joke about it and make poop jokes to the doctor so I did not fall apart and end up on the floor crying. So I carried on like that for a few years after my surgery. Each test made me feel more alone and a rat lab. The more medication they gave me that failed the more I felt I failed and as all the GI doctors looked at me like they (the doctors) didn't no what to do. A hopeless feeling falling over me as I went into my whole of going on with out talking about it. Even though it controlled my life.

As many of you know when you are the parent and have sick children you have to pick and choose what you have to get done. I was down to being so blocked that my kidneys felt like they were being kicked and I stopped eating. It was the end of the rope that we all have that is now so short.

We being ill as we are, anything big or small can push us over the edge because our bodies are already to there max and I was there. I was standing on a edge of wondering when I would stop being in a fight with my own body and wishing could do a simple thing like pee or have a normal BM (what ever that is).

As I wright this I feel like I have cut myself open wide so all could know my little secret the girl with the bathroom issues. The fear and pain that we go through when your body does not work is so over the top its hard to get up and stay positive.

Some how after many GI doctors I found (or maybe he found me) a GI doctor that for two hours listened to me and agreed  "yes there is more then your meds and we need to do test that will not hurt your body". I almost cried or hugged him. A doctor is listening to me. He gave me stronger meds but ones that did not have me doubled over and it is working with no headaches. But I am still not normal. It is a daily struggle one that can put me down in bed but I refuse to give up. 

Doctors and medical professionals can help us if they are willing to listen to us and realize they're not the one sick, Chiari and Chronic illness's are hard to live with and can control our lives. It is up to us to be our own advocate. For us to know our body enough to know when we need another doctor or more help. We can not give up on our self's. It may suck but we are the ones fighting for a pain free day. 

This is my story of one of my medical issues, it is not to scare anyone but to hope that out there someone will feel they are not alone.

I send you all love and support and hope you all know you are never alone. We are always here for you with love and support.
Love
Heather
Founder of Zipperheads for Chiari
Note: We are not a medical site and if you are having a medical issue please call your medical doctor or 911. We are a support group to share our life, be there for you and love, love you all.