I think I am going to fire my gastroenterologist. Though my colonoscopy didn't show much but minimal active Crohn's and I tested negative for Celiac I am still stricken with bad stomach pain, lots of diarrhea which is still waking me up at night and a steady decrease in my weight. (Okay, the weight part I really don't mind at all) So I called the GI on Thursday last week and his wonderful advice was to DECREASE my Entocort to just one or two pills a day (whichever I prefer - huh?!?) and take as many as eight Imodium a day to control the diarrhea. Hmmmm. Think I should fired him?
I ran this advice by my family doctor and she promptly prescribed me some Lomotil and is running some blood work to make sure I am actually getting nutrients - which she is assuming I'm not since I am still losing weight.
The thing that bothers me so much is I am back in the mindset as when I was first diagnosed and feeling like my pain, persistent diarrhea and quality of life (which is not much lately) is normal. I feel like the GI doesn't even want to try and help me. Plus, I am barely making it through my days at work and my boss is getting angrier and angrier the more I have to leave early or take off for being sick and/or go to doctor appointments - like I can help it. Someone please tell me living like this is NOT normal so I don't feel like I am going crazy!!
The other thing that bothers me is that I am also back to basing every decision I make on where or if there are bathrooms along the way. For example, our church is going on a missions trip in July 2009 to El Salvador. My first thought wasn't the money, it was 'what are the bathrooms like'. Then my Pastor explained how they would being going "off road" to some of the more desolate areas to reach people. I panicked about what would happen if I was there and couldn't find a bathroom facility. Needless to say I won't be going to El Salvador. :(
It's been a really bad few days. Here's hoping things get better.