Posted 7/12/2020 3:42 AM (GMT -6)
Hi all - I used to post here probably 10 years ago but thankfully haven’t had a need in a long time! I was diagnosed with Proctitis in 2008, I think it did spread a bit further up about a year later but not beyond reach of rectal meds. I had some trouble getting it under control but eventually achieved remission with steroid enemas and then Mesalamine enemas and had 0 symptoms for at least 8 years. Honestly started to think original bouts of Proctitis were a fluke or a one off. Eventually weaned myself off all meds about 3 years ago because I was doing so well.
Flash forward to this past March, started seeing mild symptoms again (guessing pandemic stress dud it), waited it out for about a month (in denial it could actually be a flare). By the time I went back on mesalamine enemas they couldn’t get it under control. Then I committed the cardinal sin of taking some NSAIDS (honestly forgot you’re not supposed to, that’s how off my radar Proctitis had become!) and flare really got nasty and GI put me on oral Asacol, steroid enemas nightly and Uceris foam in morning.
It’s been about 2.5 weeks on the meds and on the whole I’ve certainly seen improvement. Felt a lot better this week and if you asked me on Friday I would have been very optimistic about progress. Then yesterday I felt like I inexplicably took 2 steps back, went from bms only in morning to 4 total mostly light bleeding and mucus. Seems disappointing that with all the medication there’s still bleeding going on but I know Proctitis can be stubborn. I should also mention that my calprotectin number mid height of flare was over 4,000 so clearly lots of inflammation to heal! Haven’t done a new sigmoidoscopy yet as I wanted to give meds a chance to work on their own.
Anyway, just looking for some encouragement that these types of random setbacks are part of healing path and that 2.5 weeks in isn’t time to feel discouraged yet! I know it’s a long road but it’s hard when you feel like progress gets wiped away in one day.