Posted 4/17/2019 11:35 AM (GMT -6)
Hi everyone. I need some advice. I'm relatively new to this whole UC thing. I just starting flaring and I'm not sure what to do, so I'm hoping some veterans here can guide me.
I was diagnosed with very mild proctitis Dec 2017, by colonoscopy with biopsies showing past involvement in sigmoid and ascending colon. I had hardly any symptoms (I thought it was hemmies, which I do have also) and really only went to get it checked because I gave birth earlier that year and met my out-of-pocket for the year and it was free.
I was put on Lialda and a short course of Canasa, which cleared everything up practically overnight. Stayed on the Lialda and did well for a year with some minor bleeding only. Doctor did a sig-scope May 18 and inflammation was clear, and said not to worry blood was likely from the hemmies and said to use Canasa and steroid sups. In January, I experienced some major stress and developed bad D, no blood, that didnt stop for a month. I pushed doctor for Rowasa (he is not a fan of retention enemas for some reason), and started that. Kind of helped and firmed things up, but not back to normal. Doc said if that didnt help, he wants to scope and move up to 6MP if inflammation is back. At next followup visit, he said it's possible I have IBS too since theres no blood, and gave me a course of Xifaxan (IBS antibiotic) and said to stop the Rowasa. 8 days into excrutiating abdominal cramps and nausea on Xifaxan, I think I am in a full, major flare which started last Friday. D, blood, urgency to the point where I didn't make it to the bathroom in public, and serious pain during and after BMs, which are frequent. Stopped the Xifaxan and started Rowasa nightly and Canasa again.
My doctor will not do anything until he sees me, and gave me an appt for this Friday. I want to get scoped and see whats going on. My question to everyone is, if scope shows inflammation, I think I have a few choices- Continue with Rowasa and maybe start a steriod enema if he will let me.... or move up to 6MP or something else... or do steroids. He will likely push the 6MP, but am I giving the Rowasa a fair chance? I also have never been on Prednisone or Uceris, but he seems to treat that as a very last option.
For those that haves dealt with flares and higher meds.... Would you try the Rowasa longer or move to 6MP/biologics or do steroids? My urgency is awful, and I fear going to the bathroom because of the pain.
Thanks for reading my long story, and any advice or been-there-done that stories are appreciated. I realize everyone's experience is different, and that's what I would like- opinions. I want to be prepared for what might be next.
Side question about turmeric- I have tried turmeric multiple times for different reason, and each time my bleeding increases like 5x, and goes back to little or none when I stop. Has anyone continued turmeric even with increased bleeding? It is making things worse if the bleeding increases that much?
Diagnosed UC/Proctitis Dec 17
Remission Jan 18-Jan19
-Meds: Lialda max dose, Canasa and steroid sup as needed
-Current meds as of 4 days ago: Lialda max dose, Rowasa nightly, Canasa