My Ulcerative Colitis Story:
I yelled at the doctor: “NO, I am crazy because I am sick.”
This past May I got sick. Sicker than I have EVER been before. At first I thought it was stomach flu because after a couple of days I felt a little better and I went back to work, then I ended up in the hospital with dehydration. They thought I had C dif because I had spent most of the winter on antibiotics. The hospital actually lost my stool sample so I had to do it again. I cannot tell you how freaked out I was by this. Walking was (and still is) difficult for me. I get very tired and dizzy. The C dif came back as negative. Now I am sicker and bleeding pretty heavily. I can barely make it down the hallway of my doctor’s office to get to the exam room. He calls the GI clinic and gets me in for colonoscopy in 2 days. The prep for the colonoscopy, as you all know, is agonizing. They scope me and make an appointment for me 1 week later. The doctor tells me I have colitis. She starts me on Entocort.
One week later I am in my GI’s office and I have lost another 4 lbs, I am still bleeding and my labs are all wonky. GI doc takes me off the Entocort and starts me on Prednisone. Two weeks later I am even sicker (how is this possible?) and I am back in my regular doc’s office. He calls my GI and tells her that I am not getting any better. She schedules me for my first Remicade infusion. Two weeks later I have my first normal bowel movement. YAY! I think this is a miracle! Then I get my second infusion and I start gaining some weight back. Then 2 weeks later I am sick again. The Remicade is not working anymore. GI doc says she doesn’t know what else to do so she is referring me to Mayo. Too bad my insurance just cancelled on me and Mayo will no longer take me. Too bad that I am in the bathroom between 20 and 30 times a day and am unable to work. Too bad that my disability insurance wants paperwork from Mayo and I can no longer go. Too bad that my bleeding and my pain are off the charts and I am losing about 5 lbs a week. Not really sure what I am going to do now. I see my regular doc tomorrow. Hopefully he will have some suggestions.
I have had issues with pain, diarrhea and bleeding for years. I had a colonoscopy 4 years ago and was told that I wasn’t bleeding enough to be diagnosed with colitis.