One of the most important things to have when you are diagnosed with a chronic illness is a good support system. I believe that support system should include the physician who is treating you. Because I went to the hospital that was located near my home, I was seen and diagnosed by the GI (Gastroenterologist) on staff. He may very well be a good doctor and a fine man but my experience with him was less than satisfying. The first time I met this doctor, I was in so much pain I don't even remember meeting him. The second time he walked in my room it was to inform me that I needed to drink all of the poison (colonoscopy prep) so that he could scope me. The third time, he was late for my procedure (we were literally in the procedure room waiting for him for 20 minutes and no one had a clue where he was). The fourth time, he walked in my room and said "You have Crohn's Disease. It is very very severe and you are going to need treatment right away. I am going to put you on Remicade Infusions as soon as you feel better and you will have to take that for the rest of your life." and then he left my room. My husband and I immediately got on the internet to try to get a clear understanding of what Crohn's Disease was. I called my brother who is a pharmacy doctor and he explained Remicade to me. I left the hospital and I felt good for eight days before I was sick again. When I called the office, I was told that my doctor was too busy doing procedures to call me back and that his nurse was unavailable. When I finally did see a partner in his practice, they just wanted me to go back into the hospital on pain medication until I was stabilized. I refused that suggestion. I felt thrown to the wind. I didn't trust this doctor. I was hurting and confused. I didn't feel important. I felt like another patient who was getting general answers to my very individual illness. I decided to find my own GI and began searching the internet for patient reviews of GI's in my area.
It took me approximately three weeks to find another GI to treat and support me. When I first met my current GI, she spent over an hour with my husband and me. She went over in detail my disease, she went through each medication and explained the benefits and the side effects also the disadvantages. She took the time to answer all of our questions and allowed me to decide my treatment out of my very limited options and her advice. She made sure to do her own battery of testing and has shared all results. She has called me just to check on me to see how I am feeling. Having the right GI has eased much of the stress I have been going through around this new diagnosis. I know now that Crohn's can be a very tiresome, unpredictable and debilitating condition and I have a long road to travel with it. I at least feel that I have a physician as a part of my support system who does in fact care for me.
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