Posted 5/29/2015 1:55 AM (GMT 0)
Hello! I've been a longtime lurker, but this is my first post here. I thought I should introduce myself. I'll try to keep this short, but I'm afraid this may be a long read...
I am female, age 33. Prior to 2012, I never had significant GI issues. However, in 2012, I started experiencing my first UC symptoms, a little mucous during BMs and cramps/discomfort. Over the course of a few months, symptoms progressively got worse until there was bleeding. I finally went to the doctor, got a referral to GI specialist, and had a colonoscopy done along with the usual bloodwork. GI diagnosed me with ulcerative colitis which she said was limited to my rectum and lower-left colon. I was put on a short dose of Cortifoam, 1/nightly mesalamine enema, and 2/daily Lialda which made me feel almost instantly better. At my follow-up appointment, the mesalamine enemas were switched to 1/nightly Canasa suppository. I was pretty much back to my normal self other than having to get used to putting things in my bum on a daily basis!
My fiance and I decided to buy a house starting in early 2015. We did it, and while I'm ecstatic to own my own home now, the process of getting there was probably one of the most stressful in my life! Needless to say, my UC symptoms came back with a vengeance... YUCK! I was already scheduled for my annual followup with my GI doctor within a few weeks so I delayed calling her sooner, which was a huge mistake. I continued my usual medications but my symptoms worsened by the time my appointment came. I had several days of terrible diarrhea which was new to me. There were a few days where I felt too sick to do anything, possibly due to dehydration even though I made sure to drink lots of water. I started taking small glasses of Pedialyte or Emergen-C daily which helped immensely in feeling like I could still function. I also have lost 10 pounds over the past couple of months, which I needed to lose anyway, but obviously not in this way.
GI doctor increased Lialda to 4/day. My new insurance only covers a fraction of the cost of Cortifoam which worked wonders for me previously. So, instead my GI prescribed the cheaper 1/nightly hydrocortisone enema. She also prescribed 1/nightly mesalamine enemas, but I felt my symptoms were worse when trying to take both enemas together, so I've been using 1 Canasa in the morning instead.
I have been on the hydrocortisone enema for 2 weeks and I'm supposed to start tapering them. While my symptoms have significantly improved, and I'm feeling much more functional and normal, I'm still not 100% better. I now generally have semi-soft abnormal-looking (either too small or weird textures) stools with occasional diarrhea in the evening, and still some mucous. Urgency issues have lessened, but I'm still going to the bathroom frequently, maybe 8-10x per day.
GI doctor also prescribed Uceris (tablet) and instructed me to switch to it as a maintenance medication. This really confuses me because I do not want to be on a steroid long term. However, I do want to try the Uceris to see if it helps with any residual inflammation the hydrocortisone isn't reaching. What is the normal prescription length for Uceris? Is it safe to start the Uceris daily while I'm starting to taper off hydrocortisone enema? I was planning to use mesalamine enemas on the off-nights.
Getting answers from my doctor without an appointment is like pulling teeth, so I'm hoping some more experienced people here can help. I'm considering finding a different GI doctor to get a second opinion on the medication options.
Thanks, and if you've read this far, I appreciate you!