Today I had a flexible sigmoidoscopy as part of my Abatacept study for UC. I have been in the study for the last 6 ½ months with 3 sigmoidoscopies, 4 possible placebo treatments and 4
open label (the real medication) treatments with no improvement in my symptoms. Today was to determine if my inflammation and symptoms have improved enough to keep me in the study.
Yesterday I took the prep, 2 glasses of Pico Salax 6 hours apart, and it cleaned me out well. I arrived at the hospital to see the study coordinator at 10:00am this morning and gave her a blood and urine sample along with a symptom log for the last week. She gave me $20 for the visit and $20 for the cost of the prep. I also had to complete 4 different questionnaires about
my symptoms and condition. Each one had 20 to 30 questions ranging from my fatigue and energy levels to my sex life for the last 2 to 4 weeks. It was the same questionnaire I completed twice before during this study.
The study doctor then came in and performed a physical examination on me. We briefly talked about
my symptoms since my last Abatacept treatment 4 weeks ago. I had between 5 and 12 urgent bloody BMs per day with an average of about
8. I plotted the numbers on a graph and the doctor said it looked like the stock market. He didn’t want to talk about
my options until the sigmoidoscopy.
I then went to admitting and then to the Endoscopy Centre for the 3rd time in 6 ½ months. The orderly there recognized me and even knew my name. His name happens to be Paul as well. I told him I liked it so much (NOT) that I came back. I don’t think it is good when they start to recognize me and know my name. The nurse offered to hook up an IV line for sedation but I refused because it is only a sigmoidoscopy. They didn’t give me a hard time about
it like last time because they knew that is how I did it before. It’s becoming almost automatic now.
They wheeled me into the procedure room at 12:30 pm and the study doctor was waiting for me. I asked if he was planning to take biopsies and he said it wasn’t required at this point in the study. He then started the scope and said it looked worse than the last 2 times. I saw several small bumps in my colon and asked the doctor what they were. He said they were early formations of polyps. I saw 5 or 6 grouped close together. I don’t remember seeing them before. The doctor took several biopsies of them. He didn’t seem too worried about
them but it will take a week or more to get the results of the biopsies.
They wheeled me back to the recovery room and the doctor came with me to discuss my options. As a result of the scope I am now officially off the study. He recommended that I could go on one of 2 studies he will be starting in a few months or consider surgery. I’m not really interested in another study as I have already tried 2 with no results. He also said I could try a round of prednisone but didn’t think I should if I go for surgery. He told me to think about
it and get back to him or his secretary. He wants to see me in 8 weeks as a follow up and said if I want to talk with a surgeon contact his secretary to make an appointment with one of the 3 surgeons available at the hospital. The doctor said talking to a surgeon will not commit me to anything. It is only to get more information about
After the scope I went to the secretary’s office and it was locked so I went for lunch. After lunch I went back and she still wasn’t there. Another girl there suggested I call her to make the appointments so I went home. It was a long day but now I have to seriously think things over. Maybe it is good that I didn’t make an appointment right away to see a surgeon. This will give me time to research the surgeons to see which one I would prefer.
Diagnosed in 2000 at age 43 with UC extending half way across transverse colon.
Allergic reaction to Asacol, Pentasa and Dipentum - can’t take any more 5ASAs.
Prednisone - worked well for 1 month, then side effects became unbearable.
6-MP - blood tests showed not metabolizing properly.
Corticosteroid enema, Flagyl, Ciprofloxin, VSL#3, Adacolumn Apheresis – no effect
Methotrexate with Remicade - 7 infusions with no improvement
Folic Acid and B12 injections.
Currently in Abatacept trial - waiting for remision