I'm a little over 11 months from having my take down surgery (I had a 3 part J pouch surgery for UC). The beginning months post surgery were rough but after about 6 months things were going great. I had no urgency, could eat whatever I wanted, do whatever I wanted and felt back to my normal self - even was sleeping through the night and going 4-7 times a day.
Ever since May, about the 9 month mark, I have hit a rough patch. I have had urgency and at night time some nights I wake-up and have accidents. Also during the night (and only night) I notice small amounts of blood when I go and in the middle of going I will have extreme cramping that takes my breath away - but again this is only at nighttime. I also notice my gut being very noisy during the day and stools are generally less formed. Once or twice a week I will have a normal day, think everything has finally gone back to normal and then bam the next night will be a bad one. Odd thing is my number of trips has not increased - still only 4-7 times a day and I can go for 6 hours spans during the day without having to use the bathroom.
I take 2 Imodium before each meal with Gas-X, 2 lomotil before bed with Citrucell to bulk my stool, and DS VSL #3. Since mid May I have been on 500mg of Flagyl twice a day (in case of pouchitis - never officially diagnosed but to help with inflammation) and just started using Cortifoam (since things weren't getting better nor worse with Flagyl) last week at bedtime. I had a scope in May and the doctor saw inflammation and said it could be pouchitis but also could just be that my "young pouch" is acting up as they sometimes do during the first year. I am scheduled for another scope in August to see further up into my pouch and the small intestine to make sure no signs of my UC suddenly changing to Crohns.
Just wondering if anyone has any suggestions? Has anyone else experienced this? My doctors aren't really sure what to think. I feel like I was doing so well, things were perfect and BAM I have had a giant setback. I know the first year of recovery is full of ups-and-downs but can you have a "down period" for this long (2 months) and should I be having one this far out from surgery (9-11 months)?
I hope that things will get back to how they were but I am afraid this is my new normal. Any advice or comments from others who have shared the same experience would be greatly appreciated.
Thanks for your time and help!