Don't be mislead, I know no one on this site can actually play doctor; but I really need the opinions of some experienced UC sufferers
. Please take a look at my history and let me know if you think I (or my doctor) has missed anything in my treatment. I feel so lost, and I have no confidence in my doctor. Also, feel free to suggest any course of action (I'm
open to anything - holistic, Chinese meds, standing on my head, WHATEVER!)
Last November I started having blood in my stools, and my BMs got thinner and thinner over time. In January, I had a colonoscopy and was diagnosed with ulcerative proctitis (10 cm). I started wtih Canasa, Digestive Advantage, then Cortifoam, then tried a short course of Prednisone (maybe like 16 days?), but have never done any more steroids since then. In these early stages, I was eating pretty normal stuff because I didn't know diet was a factor.
Things did not improve over the next few months, so I was prescribed Colazal while continuing with the Canasa and Digestive Advantage (these two things I took for quite a while with no decent results). After a while on the Colazal (maybe a few weeks?), I was admitted to the hospital for a couple days due to lots of diarrhea and bleeding. I went home feeling rested but not much better. When I got home I started Rowasa enemas morning and night and Cortenemas in the afternoon. My doc cut out the Colazal because he felt it wasn't doing much since my inflammation is so low in the rectum.
I've experimented with diet A LOT as you may have noticed from previous posts. I eliminated sugars, which seemed to really help but then stopped helping (and I was miserable doing that). Now I just started the Specific Carbohydrate Diet and am having serious doubts about my ability to stick to it.
Regarding diet, it seems like the more stuff I've cut out of my diet, the worse I've gotten. I'm starting to wonder if I should just eat the way I was when I was first diagnosed. Of course, it could be that my inflammation has just gotten worse or moved up my colon. I don't know what to make of it.
Now I'm at a point where I don't know if I should seek out alternative approaches or go right to Rush University Medical Center. It has a fabulous reputation for IBD, and I live nearby. My current doc said that if my current meds don't work, its on to Remicade and Humira. I'll use them if I absolutely have to, but I'm worried that I've missed something along the way.
I've never been tested for lactose intolerance or any allergies or anything; and although I've had stool samples taken, I don't even know what they were testing for.
What's your take on all this? Have I missed something crucial or is this a pretty typical scenario and my doc isn't as big an idiot as I think?
Please share your thoughts. Thanks!!!
Katie, 30. Chicago 'burbs.
DX: Ulcerative Proctitis (10cm) January '08
Current Treament: Rowasa 60 ML 2X daily, Cortenama 100 ML 1X daily, Bentyl 20 MG (as needed), and multivitamin daily.
Diet/Exercise: Specific Carbohydrate Diet (SCD) as of 8/12. Daily yoga, walking, or cardio w/weights.
Previous Treatment: Canasa suppositories, Cortifoam, Prednisone, Colazal, Symex DuoTabs, Vitamins.
Status: Flare since diagnosis