Lka58. Your symptoms and flaring sound very similar to my own. I've been in a very similar flare since October 2019 and am just now seeing some improvement (July 2020). It's been a long road and I'm not out of the woods yet but I'll share what it took to get me to my current state and also what didn't work for me.
What I think (eventually) worked:
Took a tapered course of oral prednisone (4 to 6 weeks total, start at 40mg/day and taper down each week) and in parallel did alternating days of mesalamine enemas and suppositories. Prednisone gives nearly immediate relief (within a week or 2) and gives the rectal meds some time to gain traction. I think the enemas work but I don't think they do as good a job at the very end of the rectum as suppositories. Supps are great for the rectum but don't get as far up the sigmoid colon as the enemas. But supps are way easier than enemas for me so alternating these every other evening is just way more sustainable long term and gives the benefits of both. This method, over the course of about
6 to 8 weeks, has gotten me down to 3-4 formed BM's in the mornings with some mucus but no or just trace blood and then no to maybe 1 more BM the rest of the day. Urgency is also greatly reduced. I'm basically close to a functioning adult again. I also take oral Apriso as part of maintenance meds (3 X 0.375mg) daily. When I feel tightness in my gut (left side), I have been taking Alka-Seltzer Gold once or twice a day which has brought me relief. Don't ask me why, it just does. I plan on continuing the rectal meds to glean some additional improvement. When healthy and not flaring, I'm a 1-2 BM/day guy and I'd like to get back to that (but that's my "holy grail" goal).
What I don't think worked:
- Budesonide - Even the extended release stuff. I took this for ~6 weeks and saw no improvement. I just don't think enough of it survives the trip down the digestive tract to be effective where it's needed for me...at the rectum and sigmoid colon.
-Prednisone alone - It calms the flare wonderfully but it's a coin flip for me as to whether or not the symptoms return after the tapered course is finished. That's why I suggested to my GI to do the rectal meds in parallel to the pred and he agreed.
- Oral Apriso alone won't get me out of a flare. I'm staring to wonder if it does anything at all since my issues appear to be mainly in the rectum and sigmoid colon. Side effects are nil to low however and I'm too chicken to drop this med at this point. Probably beneficial to the rest of my digestive tract as a maintenance med.
Hope this helps. As I like to say...you can't spell "F * * k" without "UC"!
Good luck to you and to us all!
Post Edited (Marcus1969) : 7/19/2020 5:18:03 PM (GMT-6)