Still trying to figure out what causes this but the blood comes and goes. I've talked about it recently and it's still happening. Again the blood was almost completely gone; rarely showing up. This goes on for days and I start thinking "yeah, cool, I must be getting close to remission ... right?"
Then it comes roaring back for days. Frequency and urgency ramp back up. You can help but think "what did I do?" Was it those few weak moments I had bites of food not on the diet? Was it physical stress? Mental or emotional stress? Maybe this time it was because I became sick from something else; a lovely mid summer cold.
I ask people with the same condition and get a myriad of answers. I ask doctors; one says "hmm, maybe it's because your were sick... or maybe the stress" and another says "must be your pills..." and talks about pills for 20 minutes.
In this last case all three happened about the same time. I was naughty and ate a couple of brownies over that weekend. We were working hard on our house, I was up in the attic working in extreme heat, in a lot of physically stressful positions because you have to stand on the rafters not on the sheet rock. Up there several hours both SAT and SUN putting in recessed lighting. Then over the weekend I got a cold (having a runny nose with a dust mask on totally sucks BTW). I hadn't soaked through clothes with sweat like that in... I can't even remember.
With my kidney disease I've known for years that when I get sick my kidneys bleed more, my urine gets dark, and when I get over being sick it all goes back to normal. Now that I'm getting over the cold my urine is lightening up and the bloody stool is resending . Then again I doubled down on my resolve with my diet and its been a week since the physical stress.... so which was it? What helped... if anything?
Nobody knows... and that's the most frustrating about this whole thing... nobody knows. I pay over $200 per visit to ask the so called experts; the only definitive answers you get from this is to take magic pills I can't afford, cheap pills that crush your immune system, or cut your colon out. I talk and read other peoples opinions on how to manage this and you get every answer imaginable. Just started talking to a new doctor who's much more open to non-pharmacutical approaches but I haven't got anything definitive from him yet.
For now I'm still riding the roller coaster. Going to up my sulfasalazine and finish weening off of the prednisone. I really want to try this new doctors regiment; it sounds interesting and I'm ready for a new approach. If I were to draw a line from when I started this to now the overall trend would be in the right direction. Improvement is measurable and evident... it's just the day to day ups and downs that make it hard to FEEL the improvement. Truly is the proverbial two steps forward and one step back... still moving in the right direction just painfully slow.
