Hello! My name is Jeannie. I’m 31 years old, from Michigan.
My Ulcerative Colitis Experience So Far:
I was diagnosed with Ulcerative Colitis in December 2009. That was the first flare up I had, I think. I ended up in the hospital for 19 days. About 4 years prior, I became ill with abdominal pain, vomiting,and diarrhea for about two weeks. At that time, the doctors kept telling me it was a virus and would clear up on its own. Luckily it did. No testes were performed either. Looking back, I wonder if that was my first flare up.
In November 09, I started not feeling well. I was exhausted and my stomach hurt. In the beginning I didn’t have diarrhea or bloody stool. After about 10 days, it started. Again, I was told it could be a virus and was given Flagyl. After several days, I was feeling no better. My husband took me to the emergency room one night because I was in so much pain. They did a lab work and a stool culture, but still no answer.
Eventually my doctor admitted me to the hospital. I was dehydrated and malnourished and very frustrated. The doctors started a battery of tests. I had CT Scans and more lab work than I could count. The CT Scan showed that my colon was severely inflamed, so I had to wait to have a colonoscopy because of the risk of perforation. Eventually they did the scope. Not good news. My entire colon was inflamed. I was started on Asacol, but it elevated my liver enzymes. So I ws switched to Pentasa. Also a mega dose of Prednisone.I was not allowed to have anything by mouth except ice chips. A PIC line was put in and I was put on TPN. I stayed on the Prednisone for almost nine months, slowly tapering my dose. I had maintained my Pentasa at 500mg three times a day.
In November 10, I started not feeling well again. I was put back on the Prednisone for a short time. I managed to stay healthy until Memorial Day Weekend this year. Again, my belly started to hurt. In my heart I knew what it was. I went to my family doctor immediatly, because getting into my GI takes about a month. I didn’t have a month to wait. He increased my Pentasa and did not want to put me on Prednisone again. It didn’t work. I ended up in the hospital again. I was in the bathroom constantly and couldn’t keep anything down. Again, dehydrated and malnourished. I spent the month of June in the hospital, a total of 24 days. I missed my daughters 5th grade graduation, her end of the year field trip, class picinic, Fathers Day, and my husbands birthday. My Pentasa was increased to 1000mg 4 times a day and I was started on the TPN.There was talk of starting Remicaid. I never had another colonoscopy, which I still don’t understand. I did have a sygmoidoscope . After the syg, the GI felt I was into remission and did not need to start Remicaid.
I came home on July 2nd. I was not the same person. I had lost 40 pounds and had no strength. I had a nurse and a physical therapist coming to my house. I still don’t feel like the same person. I did decide that I would be getting a second opinion regarding my condition. I started doing reseach and asking around. I was recommended to see a primary care physician that my aunt sees. I scheduled an appointment with her and fell in love. She recommended a GI for me. The only down side was I had to wait about a month to see him.
I had tapered my Prednisone down quickly under the old doctors advise. I took my last dose on September 10, 2011. On September 30th I had to call my new PCP because I had diarrhea and severe abdominal pain. Prednisone again. I had 10 days until I saw the GI. On October 10th, I met Dr. Gun. He was awesome. He said there was no way I should be on Prednisone again so soon. And why hadn’t anyone done another colonoscopy? So yesterday I had my colonoscopy with 7 biopsies taken.
I am now starting Imuran along with my Pentasa and still tapering the Prednisone. I have to go this afternoon for more lab work and wait for the biopsy results. There is still a question whether this is Ulcerative Colitis or Crohn’s Disease. Very frustrating since its been 2 two years since I was diagnosed. Eventually I will start Remicaid. I just want to be able to eat normally! I love to cook and I love to eat even more.
Sorry to be so long winded, but it’s nice to vent to people who are going through the same thing. Thanks for listening and good luck to you all!