Posted 1/21/2015 11:06 PM (GMT 0)
Up through about 2.5 years ago, I had mini-flares combined with huge flares throughout the year. It got so bad that I half wished I'd get into some accident where my large intestine would be sliced and the ER surgeon would have to remove it versus choosing to have the huge undertaking.
I read your post and I may read too much into it. It seems you are quite frustrated and wanted to try and help.
To try not to make this a novel, I was at the end of my rope about 3 years ago, or so, and scheduled a visit with my gastro doc to get a surgical consult and head to the table. The day before the visit I stumbled onto a site/blog where a woman had the exact same condition/symptoms - it was almost like I wrote it. Massive urgency, frequency (10+ trips per day), immediacy in the shower and barely making it 5 steps to the toilet, and more. I took that to my doc and said, "This is me." It shocked him because I was under the impression, from past docs, that my condition was the norm. The blog had a couple things which helped her, but they were not for me. Essentially he went over the various grades of meds (I currently take Lialda), asked q's about flares, etc.
I went to the surgeon and she ultimately scared me straight. She said 'if you beg me, I'll cut you, but I highly recommend you try other things.' One thing she stated to try, which was the first huge step (i.e. Neil Armstrong) in what is essentially a new life, is an anti-diarrhea pill. One simple little pill to "slow things down in there." I tried it - and it was like a miracle. Within a day or two my BMs were halved. After a month I thought 'hey, what if I take two?!' Please don't - I was constipated for a week and learned a brand new pain at 3 am when all of the 'push'em out shov'em out' meds went through. Since then, though, I've had a new lease on life. At times, depending on what I eat or drink, I'll have multiple trips to the bathroom in the morning. But that one simple pill made a huge difference.
The next huge improvement came when I met my current girlfriend in March 2014. She eats a lot of raw/organic foods and makes juice every day. By juice, I mean she has a juicer (i.e. Jack LeLanne juicer) and juices apples, oranges, ginger, pineapple, green stuff, etc. After about a week of joining her, I felt a lot of huge improvements. My bowel movements lessened and were more formed, urgency all but ceased (some foods still get me), I sleep a TON better, I felt better, I wake up more alert and rested, I have more energy, I feel like doing things versus just sitting on the couch, I kicked pop, my attitude improved… I’m sure you get the idea. (Side note: There’s a YouTube video of a guy who started juicing and said he no longer uses his UC meds. I’m not that brave at this point.)
I still have some issues and some days I go a lot, but that’s usually due to what I drank or ate the night before. For example, I just returned from Vegas and barely had any moderate to major issues, but had multiple BMs due to alcohol. And I’ve had one flare-up in the past 1.5 or 2 years which lasted maybe a week (prior to that, I’d flare for about 3-4 weeks from beginning to heavy blood to the end and usually have at least 5 per year).
I’m not sure if any of this will help. I can only speak to what helped me. First, I got the urgency and frequency under control; then followed a ton of nutrients into my body via juicing.
All of this to say: Do not give up. The oddest, smallest, least significant thing can change it all. One small over the counter pill to stop diarrhea changed my outlook and truly changed my life.
I know that I'm far from remission and I'm very much looking forward to reading about the Nopal solution for everyone, as well as trying it myself.
Thanks to everyone in this forum - I've learned more today than...well...probably since I was diagnosed.