Posted 6/22/2014 2:35 PM (GMT 0)
Hi,
I stumbled across this forum while looking up some symptoms and issues related to my UC. As I began to read the threads, I found myself immediately feeling some sense of relief that "I'm not losing my mind." :) In the way of a brief introduction, I'm a 59 year old male. I was fortunate to be in perfect health until the mid-1990's when I began having symptoms that led to the diagnosis of UC. My PCP referred me to a GI doc who has truly been my partner with this to this day. He's been great! Most important, he or his practice have been incredibly accessible to me by phone. After my diagnosis we quickly got things under control. He took what I referred to as "a common sense approach" to my illness. Any time I had a flare, we were able to get it under control quickly. While I continued to have some occasional discomfort and certainly go to the bathroom way more than everyone else, it's rarely interfered with my life to any great degree.
My good fortunate changed about a year ago. I began to flare, quickly called my GI doc, and started a course of Prednisone. It worked great--until we tried to taper down. At a certain level, things regressed. It was incredibly frustrating--actually darn demoralizing. We started to talk about Remicade (the literature scared the hell out of me)--and after discussions with him, my PCP, my wife, etc., I began Remicade on 1/31/14. I had some improvement, but nothing close to what I had hoped for.
The funny thing is that I began to really look forward to my "Remicade Fridays". His staff of 2 Remicade nurses are amazing, and it was the first time I was around other people with similar experiences. I made sure to take the entire day off from work--and disconnected from work email. After the first 3 doses I had only limited improvement. Does number 4 started to show much better improvement--and then things went very bad. When it got to a point of me missing work, not being able to eat, sleep, etc . Easily the beginning of the worst 3 weeks of my life. I called my GI doc. (Yeah, I waited too long.) He got me in the next day to "take a look" and by observation and culture knew that I had C-Diff. I started on Flagyl. Had some decent improvement, until by the end of the 10 days (the plan was to continue a 2nd day course). On days nine and 10, things went real bad again. I reached him--and we spoke for a good 20 minutes on the phone. He switched me to vancomycin, and thankfully within about 2 days, I had dramatic improvement. I also realized how lousy the flagyl made me feel. I still have a few days to go on that, but am easily back to where I was before the infection.
Now that I know why the increased Remicade dose didn't help, I'm "cautiously optimistic" that I'll get this under control. I've had some issues that I know were connected to the infections--pain in my lower back, testicular pain, etc. These are gradually resolving, as well. I still have definite signs of my flare--and the early mornings until mid-mornings are still the worst. But, I'm able to function, so can't complain too much.
Anyway, as I mentioned--it was looking up those issues that I found this forum. Hoping to continue in getting this under control, and maybe back into remission!
I can't thank all of you enough for your postings on this forum. I've been reading posts for the last couple of hours, and again--feel that you've helped me regain some form of sanity. (Not that I was of sound mine before the UC... :) Wow--sorry for the lengthy post. I didn't realize I had this much to say!