Today I had a flexible sigmoidoscopy as part of my Abatacept study for
UC. I have been in the study for the last 6 1/2 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 gl***** 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 ***
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 1/2 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 the possibilities.
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.
Take care,
--
Paul
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