hi all. I had takedown in June 2016 and have suffered with a multitude of problems since then (you may recall my previous posts)?
Basically, there is NO improvement whatsoever. I take 20mg loperamide 4 X daily, 60mg codeine 4 X daily, slippery elm, VSL#3 yet I still have incredible painful urgency, go numerous times in the evening and overnight (interestingly, things calm down somewhat during the day??) and just feel so incredibly down and desperate. My bottom is so, so sore and I'm getting to the end of my tether. My diet is restricted and I follow the fantastic diet sheet here to the letter
My consultant is incredibly supportive however and I now have an appointment scheduled to see a specialist GI in a couple of weeks. I was prescribed Cipro for a couple of weeks as it was suspected I could have pouchitis; I must say my symptoms did improve but unfortunately as soon as the 2 week course finished I got a chest infection and went straight back to square minus 100.
Can anyone, anywhere suggest anything I can do to at least alleviate my symptoms. What do you think could be the cause? I feel like giving up which is so defeatist as I've fought so hard but I can't deal with the pain. By giving up I mean asking for the pouch to be removed.
As an aside, my temp ileo was notoriously difficult to manage; my output was insanely loose and I was on the same meds that I'm on now.
I do sometimes hear my stomach making whooshing/gurgling sounds; not sure if that's relevant? And also I get incredibly painful anal cramps which make me go rushing to the toilet where explosions often erupt.
Suppose the title of my post 'bit of a pickle' is an understatement, but I'm trying so hard to remain positive.
Thank you for your time reading this.