On Monday March 9, 2009, my diagnosis of Ulcerative colitis was announced. I had been sick for three weeks and my previous medications used for proctitis were not helping. I was no longer able to go to work, to take care of my family not to mention myself.
I was in pain all the time and was experiencing urgency to get to the bathroom to expell large amounts of blood and mucus. I had lost about 10 pounds although that didn't put me in a bad weight place, it did indicate a problem.
Two years ago I went through what I thought was a bad flare up of proctitis (from which I have suffered for 13 years, first diagnosed during pregnancy). I was given salofalk enemas to add to my salofalk suppositories and within a couple of weeks all things were back to normal (except my weight which I was happy with as I had lost the dreaded last 10 pounds of baby fat).
Back to the present, salofalk didn't help at all. I wrote to one of my best friends who also has UC and got some advice. She and my partner, prompted me to take the steps to get medical care and that resulted in a visit to my fabulous gastroenterologist.
He is awesome. He took plenty of time to explain all the possibilities, what he might find, what he might prescribe and what action may have to be taken. He suggested that we would likely start with some stool samples and antibiotics and then move to prednisone if necessary.
He asked for the pediatric scope, stating that I was a little person and Ithought this was not only hillarious but great! Then he administered the pain killers and anesthesia and I didn't care about anything. The test was painful and I was surprised at how often I kept coming to moaning and wishing for the end. I know my insides were on the screen but I couldn't see and I forgot to ask for a DVD version to take home (this is a joke, I don't think it is offered).
After a little time in the recovery room he came in to tell us that I needed to start on the prednisone immediately, there would be no waiting. I also started on two antibiotics and provided three stool samples (really there was no stool, only blood and mucus but that was all that I had).
For three days, I took my meds, lay around in bed and hoped for something to feel better. It didn't. The bleeding increased, I could hardly eat and I lost more weight. Thursday afternoon, the prednisone was doubled.
Each morning I still get up cramping and bleeding but the rest of the day the blood is about 1/4 of what it was. I go to the bathroom 8-10 times a day I think but I need to keep better track of that. I am bored of my bathroom. I am trying to eat more, but I often feel very nauseated. I was told by my doctor that I could eat all the chocolate I want but it just makes me feel barfy.
Today is Sunday and quick trip out to the grocery store has completely floored me. I have been in bed ever since with terrible pain. I want to eat but I don't want to. I want to do something, anything but I can't and I am so tired.
I think I am beginning to understand what this diagnosis could really mean. There is no cure, no quick fix, no easy answer. This will require care, caution and support. I am trying to deal with this as a life change and it is overwhelming. I am sad and grieving my good health.
So this is the first post. We will see if I continue. I hope to track my illness and my travel into remission.