Hi all! I am getting really desperate with my recent flare and not sure what to do anymore. I had a major flare a year and a half ago, but it was soon put under control with pred and oral and rectal mesalamine. However, that didn’t put me into remission, as I’ve been having a simmering flare ever since. Sometimes I have good days, sometimes I experience mini flares which go away after some time. After one of those mini flares in September 2017 I’ve been put on hydrocortisone suppositories. I’ve been using them ever since – for past three month I’ve been doing them every fourth day (once a week basically). Unfortunately, at this point it looks to me like things are turning for the worst. I had a cold two weeks ago, experienced unstable sleep patterns and missed one dose of the hydrocortisone suppository. Sure enough for past few days I’ve been noticing loose bm with mucus and traces of blood.
I visited my GI yesterday and he doesn’t seem to be taking me seriously. He said to just keep doing what Im doing and hope for the best. He also said that he is a little concerned with the prolonged use of the hydrocort suppositories, but at this point it is a lesser evil out of other options that are out there. Also, he gave me an option to use hydrocort enemas for few days whenever I think is needed. In addition to the GI I am seeing a naturopath who has me taking a lot of supplements. They seemed to help at first but now are not doing much. I am really frustrated by the situation as I am basically waiting to get really sick for someone to take me seriously. My GI brought up immunosuppressants yesterday, but said that he thinks I am not yet there. To be honest I am super scared to take that step and don’t want to go there until I absolutely have to.
Right now my symptoms are one bm per day, sometimes soft and formed, sometimes loose, with occasional traces of blood and mucus, some abdominal discomfort after eaiting. My medications include 2.4 g of lialda, nightly rowasa, morning canasa, hydrocort. suppository every fourth day, many supplements.
I would appreciate any advice or input regarding my situation, as I really am struggling with the next steps.
Diagnosed in 2010 - moderate pancolitis
2 year remission since 2014
September 4, 2016 - flare begins, 6 or more bms per day, 40 mg prednisone, hydrocortisone suppositories (stopped Nov. 9)
Scope November 9 showed mild, distal UC.
Current medication: nightly Rowasa, nortrypteline 10 mg from ibs, Baswellia, Turmeric, multivitamin, TCM herbs, acupuncture