I was mentioning the possibility of future surgery to my husband again tonight. He still thinks it's too extreme, and I'm still afraid that I won't be allowed because I'm not "sick enough" but I really look forward to the idea of being able to end this all in the future (few years).
I know he doesn't really see how this affects me day to day - I'm not sick enough to *show* it but anything beyond the day to day work-small errands-home routine gives me incredible anxiety, and legitimate anxiety, not something that can be medicated away. I made it through the weekend's social events with lomitil - only had to go once on Friday, conveniently before leaving for the wedding, <em>but</em> was left with this little cramp in my side that felt like my body's.. well the <em>disease's</em> way of saying, 'don't think you can forget about me, I'm still here!'. Was fine for Saturday's party but I was falling asleep on the comfy couch in the evening, thanks to the meds, and suggested we leave when it started getting late, not because it was late but because I was starting to feel gassy and in my experience that late night gas starts turning into more and I didn't want that to hit on the long walk back the car. (Sadly my mind still thinks I'm a night person but my body doesn't.)
Today my body seemed to be making up for lost time, 12 total unless another sneaks in before bed. (Not d, just firm little ping pong balls, all day long.) 11 of those were fine, at home or mostly at work without any meetings or badly timed phone calls, but <em>one</em> hit in a drug store I've never shopped at before, stuck in line behind a woman obsessing over her coupons... How do you explain that kind of torture to someone who's never experienced it?
Anyway I was researching tonight... I know I don't want a j-pouch - if I have surgery it's to be <em>done</em> with pooping the "normal" way. I assumed that meant an external bag, and he was honest enough to admit he'd have to think about how he'd feel about that. Then I read about the k-pouch... seems like the best of both worlds! No more pooping the old fashioned way, but no external bag for the ick factor.
Has anyone gone this route? Why do we only hear j-pouch?
~ Ulcerative Colitis diagnosed November 2010 : better but not *better*
Current meds: Lialda x 2, Librax x 3-4, Endocort x 3, Pamelor x 50mg before bed, nightly Rowasa enemas
Fiber capsules x 3 daily
Not UC related: Lamotrigne x 100mg, pantoprazole x 40mg, Quasense (birth control - 4 periods a year!)