Posted 9/16/2014 9:42 AM (GMT 0)
your story sounds very similar to mine I am currently on balsalazide 9 pills a day, steroid enemas at night and mesalamine enemas or suppositories in the a.m. I have 30 cm involved and every time I try to lower the dose of mesalamine the blood returns. I had a full 3 months of remission and my disease keeps creeping back every 3 months or so.
My doctor tells me is is moderate and it is low, and I do feel like he is trying to make me feel better, but I am always telling him that I am concerned that it will go higher and he said don't worry.
3 1/2 years and it did go from 20 cm to 30 cm. even though doctor insists that it hasn't gotten worse.
I have refused pred also and I am the one who suggested the steriod enemas from reading the posts on this forum, I think if this forum didn't exist I would be in worse shape.
I work with the public so am very concerned that if I was to go on anything which lowers my immune system that I would be getting constantly sick and thus even more uncontrollable flares.
what amazes me are there are so many good people on this site that seem to have worse condition and seem to manage there symptoms in some way or are able to at least live their lives as usual.
I don't seem to be able to do that. I feel that this disease has taken over my life when I am flaring and that is all I think about.
I think you will get your disease in control keep taking the steroid enemas until no symptoms appear, I took them for 21 days last time and then rotated the dose with mesalamine enemas for 2 weeks, one day on one day off, and then stopped. It did help me to get to remission for 3 months, but I also attribute it to vitamin d (sunshine) and have bought a vitamin d lamp to use to keep my vitamin d levels up. Also probiotics help, I use vsl#3 ds, which is a prescription and expensive, but there are others.
Good luck and hope you feel better soon.