September 2000

September 11, 2000 was my day of HELL!! I was to have an Endoscopy and a small bowel series with barium. Things didn't happen the way I intended. We arrived at the hospital at 7am, and the nurses had my IV by 8am. The nurses took me into the procedure room. The doctor and nurses didn't understand about the NG tube. I was suppose to get a NG tube placed so that I wouldn't have to drink the barium, only it was to be done while I was still sedated. A nurse sprayed the numbing stuff into the back of my throat. The doctor called the flouroscopy department, and then decided to not give me the NG tube. The nurse started giving me the sedation meds, but I didn't get sleepy. They gave me some more and I became a little bit drowsy. They tried to get me to go asleep but I just wouldn't. The doctor went ahead and started the procedure. I was awake the entire procedure. It was like hell I tell you, like hell! After the test was done the doctor came to my room to tell us the results. They found some irritation at the top of my stomach, and in my esophagus. They also found little bumps and a bigger bump which they labeled as polyps. Next I was sent fo my SBS. We arrived at the x-ray station at 11AM. I had to drink 2 big glasses of barium. It took so long for this test. They were taking pictures every 20 minutes. I had to lay on my stomach a few times and it was very painful. I was very tired and I kept falling asleep in the waiting area. The nurse said I could lay down on the X-ray table. I wasn't done with my test till 5:30PM. A few times when they were taking pictures I did get a glimpse of my intestines on the screen. I believe I seen some bowel narrowing, about 7 or 8 inches.

September 15, 2000

Today I had an appointment with my GI doctor to discuss the finding of both my endoscopy and SBS. The SBS has shown that my disease has progressed. The way the doctor described it the inflammation has doubled in length to about 9 inches. The SBS also showed alot of strictures. I also got the results from an immunology blood test the doctor did a few months ago. It showed that my Crohns disease is genetic, meaning that I got it passed down from someone in my family. Most likey my grandpa because he had Crohns disease. The doctor and I discussed the kind of therapy I was going to get for my Corhns disease. He is going to give me a dose of remicade. If the remicade doesn't help then I will need surgery. Thats how bad it is this time. Bad Bad flare... I hope now the doctors believe me when I say I'm having pain. I have tried to tell them..but sometimes people just don't listen to you.

End of September 2000

My doctors nurse called me to tell me that my remicade was approved by my insurance. Now all we have to do is set up a date for me to get it. The doctor is scheduling me for another colonoscopy, URGH! I've been running a temperature of 101*, and a few times I've coughed up blood. My doctor gave me trimox incase its an infection. I've been having alot of ear aches too. The doctor has changed my anti biotic to biaxin. Results from a chest X-ray I had done when my doctor gave me biaxin show that I have pneumonia in my upper left lung, and my blood work says my SED rate is 50. Now I can't get my remicade!!! You have to be totally healthy and without infection to get it. This really sucks! I really wasn't looking for this to happen to me. Now I have to wait even LONGER....

Please..don't stop reading now...