Unpredictable and Immediate Urgency to go (how fast can you sprint from your front door to your bathroom?)
Hemmoriods (like the UC isn’t enough by itself?)
Over the last year I’ve been in a constant flare. My doctor tried me on everything from suppositories (which made me worse), to steriod enemas, to Lialda. After doing a colonoscopy, I found out that my original diagnosis of Ulcerative Proctitis (just the first three inches) has now spread to my entire large intestine. (Even though the textbooks say that NEVER happens). I spent about a month in bed barely eating and running to the bathroom every five minutes til my doctor put me on Predisone. Although that allowed me to get out of the bed and back to my life somewhat, the side effects were driving me nuts. I was swollen up like a cabbage patch doll, my hair was falling out, and I was eating like a horse. I am still RUNNING to the bathroom every time the urge comes, sometimes barely making it in time from one end of my house to the other.
I am currently preparing for my 4th dose of Remicade now. I haven’t noticed any improvement yet and I’ve made the decision that I’m giving it til the end of this year (7 doses) to see a big improvement or I’m opting for the J-pouch surgery. I’m off the predisone and as of a week ago, I’m also off the lialda per doctors orders (Since the doctor says 2% of people actually get worse on it… coulda told me that BEFORE he put me on it lol) Although I really do like my Doctor, he’s been great offering all kinds of options. The last year has been very frustrating, embarrassing, and painful. This site has been very helpful to me. Seeing how others have reacted to different meds and how they’ve handled surgery has be reassuring.
My Biggest Questions at this point are:
- How many Remicade treatments do I go through til I realize this is another fail option for me?
- How do you prepare yourself for a 2-3 part surgery when life is so busy (kids, family, job, etc)?
Where I’d Like to be in 1 Year: