Hello all. I just joined this site. I was diagnosed in May of 2008. Tried several meds and was hospitalized several times over the next few months. In November of 2008 I had a resection and had 18 inches of my small intestine and my ileum removed. In the mist of all of this I was confused. I didn't understand the disease. I was not happy with my doctor. He was part of a large hospital and I saw him once in the whole time I was his patient. He never even came to see me while I was at the hospital - it was student doctors or his associates. I loved my surgeon and after my surgery I was in a much better place. I found a new doctor that was not a crohn's specialist but a GI and I loved her. She listened to me and my symptoms and believes what I say. I started Humira back up after my surgery and have been on it since January 2009. I was doing every other week injections until July 2012 when I was pushed up to every week. However I have never been symptom free. I still have bathroom issues and probably go as much as 6-8 times a day. I still have pain (but can be controlled with pain meds). And I am always tired. Feel as though I could sometimes fall asleep at my desk at work. I guess I never expected to be pain free. I just assumed that I would always have some stuff to deal with. Over the years I have had several tests but never a colonoscopy since my first diagnosis. My doctor ordered one that I had done last week. I had polyps that were biopsied and was told there was no inflammation. I was told the Humira was helping keep the crohns under control. But am I missing something? How can you know that? After all the disease was originally in my small intestine. My fear is that my doctor is trying so hard but my case may be out of her realm of what she knows to do. I have tried a few other doctors in the area but none I have cared for. It is hard to find one that listens to you. One that actually pays attention to what you say and what your body is doing. I have a wonderful family that is very helpful and a husband that adores me. But in the end they still don't understand. They don't know what it is like. I work outside the home and have 4 kids with very busy schedules. I don't want sympathy - I just want someone who can relate!
Thanks for listening to my story.
Thanks for listening to my story.
