Just a quick rundown of events up til now...
I started getting symptoms of CD in my early teens. I have lived with it constantly for over 20 years now. I have not been in remission ever. Not once in 20 years. Well, that's not quite true. Last year, I had a lower respiratory infection. I told the Dr. that antibiotics seemed to make me have even worse D than I normally did. He prescribed Levaquin to clear the infection, and told me that the chances of me getting worse D from the Levaquin were far less than the usual antibiotics. At around day four of taking the Levaquin, I achieved three beautiful days of remission. I had the first normal bowel movements I had had in over 20 years.
Fast forward to last month. I had been taking large doses of Immodium (8 to 12 pills per day) to make it through my days at work. I finally broke down and saw a GI for the first time on October 9. I had a colonoscopy the next day. During recovery, he stated that he saw no visual evidence of CD during the procedure. Imagine my surprise when, ten days later, his assistant called me and told me that two of the three biopsies taken showed active crohn's in my colon, and the Prometheus Labs series all showed positive for CD as well. They put me on 9 mg of Entocort and 2.4 grams of Lialda per day. I have had very limited improvement on these. Oh, and he also put me on a 14 day course of Xifaxin after I had told him about the three wonderful days I had had from the Levaquin. The Xifaxin did nothing.
I have had some improvement: I'm down to about 4-6 BM's per day, compared to 12 per day prior to the Lialda and Entocort. However, this isn't good enough for me to return to my job (I'm an airline pilot, and the FAA requires complete remission to return to flight status). Every BM for me is still very crampy; never the normal urge to go, it's always immediate and (as stated) crampy. I still get D about once every four days.
So now I don't know what to do. My opinion is that we need to continue to look for CD locations. I'm thinking small intestine involvement. I really would much rather look for other disease locations than go to the next step up in the CD chain of meds. Possibly the "swallow the camera" procedure? Also, is three weeks long enough to really get the full benefit of the Lialda and the Entocort? I'm also thinking that maybe switching to Pentasa instead of Lialda might be a good idea since Pentasa treats the entire length of the GI tract downstream from the stomach, where Lialda is colon-specific.
What I think is odd is that he had me do a gallbladder ultrasound followed by the gallbladder nuclear medicine procedure. I'll get the results of that test today at my GI appointment. Doesn't it seem odd that he's jumping at the gallbladder when I've never really had gallbladder symptoms? I'd much rather be throwing money at tests that could find CD in other locations than GB tests.
I dunno. Maybe I'm just getting impatient since I'm off of work until I can get this figured out and in remission, and I'm just anxious for him to get the relevant tests done quickly since every day is lost pay and I have a family to support.
Edit: Sheesh, I got so wrapped up in everything, I forgot to ask...has anyone had much benefit from taking "probiotics"? Specifically, I'm thinking of asking my GI if it's ok if I try VSL#3 for a while.
Post Edited (CrohnsDaddy) : 11/6/2007 12:27:12 PM (GMT-7)