This is my first post here but I have been a lurker for a while. I am so grateful to all of you who share your experiences with UC. It helps not to feel so alone.
I was first diagnosed with Ulcerative Proctitis about 10 years ago. I was prescribed canasa only. My symptoms were so minor- mostly rectal bleeding and occasional bouts of pressure followed by diarrhea that I didn't take the meds regularly. I would have lots of painful gas that was releived by the diarrhea, I'd feel a bit tired from the experience but then was fine th next morning. I started taking the canasa more regularly about 5 years ago and have had few of these bouts. The rectal bleeding never really went away and I tend towards constipation.
Last March I had another colonoscopy which showed mild inflammation in the very distal 6cm of the rectum and in the cecum around the appendiceal orrifice (which I read might not mean much). I continued on canasa.
about a month ago I had several days of diarrhea and pain which I thought was brought on by eating some cabbage. It went away. Last week I started having more and more urgency, pain, pressure, bleeding and was waking up through the night but not passing much. I saw the physician's assistant on Monday who thought constipation might be making things worse and recommended miralax twice a day for three days then daily, a probiotic and continue on Canasa. She also did blood work. The mirilax seemed to clear things out but I had to back off on it because I am still passing something every hour or so. Not eating much but its going right through.
Wednesday she called and said my inflammation rate is very high. She prescribed Lialda 1.2 two tablets daily and Entocort 3MG, 3 a day for a week,then 2 a day for another week, then 1 a day for last week. Also to stay on Canasa. I took my first doses on Wednesday.
By Thursday I was in so much pain and exhausted that I called to ask what would help with pain. She basically said it would take a few days for the meds to work and that if tylenol wasn't helping I should go to the ER for a CT scan. This seemed really extreme to me. I pushed her a bit and she agreed to prescribe me vicodin for a few days. The vicodin has helped with the pain tremendously. It says I can take 1-2 every 4-6 hours. I am trying to stretch it and only take one every 6 hours.
Whew. That was a lot to write. My husband and mom are still worried and think that I should be better by now. I am really really tired and still going to the bathroom about every hour. They think I should go get a CT scan to make sure there's nothing else, but the idea of being in a car and then the ER seems awful to me. I keep thinking that the meds will start working soon. I also think that of course I am tired between not sleeping, not eating much, all the straining, and the medications. Any thoughts? Sorry for such a long post. It's good to write it all down.