I was diagnosed approximately 4 years ago with ulcerative proctitis (my UC is limited to just the distal part of the colon).
I was at that time 45 years old. My doc put me on Lialda and Canasa suppositories. These didn’t work and I’ve had to use steroid enemas for flares over the last couple of years. I underwent a colonoscopy in August after going thru the worst flare ever and had to miss work for over a month. During this time I was diagnosed as having grade 4/4 ulcerative proctitis and my doc said that if I didn’t start on Imuran (immunosuppressant drug), that I could easily end up with rectal CA in a few years. So, of course I started on Imuran and still take Lialda daily. I tried to talk with my doc about diet and he just waved his hand and said, “diet has nothing to do with your problem, it’s all auto-immune). The good news: the Imuran has helped some, still have a little bleeding but not much and over all more control over Ulcerative Colitis Symptoms such as bloating, gas, diarrhea, etc. The bad news: for me the Imuran has caused major hair loss, constant joint pain and lots of swelling. I even got a prescription for Lasix to take off some fluid. Perhaps I will try the UC diet. I’m sure it can’t hurt and I could stand to loose a few pounds. I want to be around to continue to raise my 11 year old daughter.
I enjoy being active and love my work as a nurse.
I don’t want to be disabled.
I just want to feel good again.
Has anyone out there had experience with this type of UC that I have?
My doc says that with this type, it usually doesn’t spread upward, stays just in this area but is very stubborn in healing.
Can anyone relate? Any other suggestions?
Canasa suppositories work to help with bleeding. Steroid enemas work but have terrible side effects and can be used only occasionally. Imuran has helped some but still having some bleeding and the side effects are terrible too.
written by: Sophie’s Mom
submitted in the Colitis Venting Area