typical day for me... we'll go with during a flare cuz that is where i'm at and have been for the last year, in the worst flare of my life.
but a day recently cuz these are much better days than the last 12 months... those days were horrible!!!
so... i wake up sometime in the early still dark a.m. and go to the toilet for at least a half hour.
go back to bed and lay on my back and try not to move, cuz if i move im back on the can.
wake up anywhere from 8-10am (i have to take tomazepam for sleeping cuz the prednisone gives me insomnia-so sleep patterns are messed up), turn on my computer and go downstairs and make a cup of premade powder chai tea (no caffeine) and if its later, towards the 10am mark when i get up, i make a plain bagel and have my 50mg of pred as well.
thank the stars that i own my own company and im lucky that i work from home. i would have been so fired if not cuz there were about
3 months where i didnt even get out of bed at one point.
for the last year i'd go to the toilet like 20+ times a day. always in there. cant wear a short skirt cuz u get ring around the butt from sitting on the toilet seat, plus the 2 red marks on the legs just above the knee from resting your arms there. LOL
but these days (since my hospital stay a month ago) my bm's are only like 2-3 times a day and getting close to normal. the pred is making me eat lots and im pooing lots now too and it is excrutiating. it takes about
and hour or 2 to recover from going to the bathroom. my inflammed colon hasnt had a solid poo go through it in a year and it doesnt like it at all~!!!!!!!!
i work on the computer all day, so sitting down to work isnt always what i do after the can. maybe lay down on the bed or pace the house for a bit waiting for the pain to ease.
everytime i need to go out and meet a client, (which thank god isnt very often since in my line of work i can do a lot over the phone and internet) something in my gut goes "ooahhaggajjhaa" and i feel like i have to use the can now or very soon, whether i have to or not. i think it is just a habit type response since ive been doing it for a year. many times i have to pull over to the nearest loo wherever that may be.
then i get stuck into my work and forget for a bit about
my UC (until i have to run to the can of course).. and then my honey comes home and we play WOW together.
then eat dinner and maybe watch some tv or a movie.
take more pills and go to bed around 10pm-1am.. generally. and then lay on my back and try not to move.
in australia the electric blankets go underneath the fitted sheet rather than on top like a blanket. so i always have that on to help with the cramping and pain. not sure if it works or not, but i do it anyway.
then i hopefully fall asleep and then i wake up again in the early dark a.m. and it starts all over again.
when im not in a flare (forgot what thats like).. i dont even think about
UC at all.
i just go back to so-called normal.
steph - 31 year old female - diagnosed UC in 2000
started as proctitis and now is pancolitis..this year long flare is now severe on left side only.
50mg prednisone 1x day with breakfast
50mg imuran 1x 8pm stopped it to try and have a baby
2x 500mg mesalazine 2x day + night
colifoam 1x at night
now taking calcium supps for pred side effects
VSL#3 didnt work - Aloe Elite didnt work - Budesonide 9mg day didnt work
ive lost 40+lbs and my legs look like sticks ... ewww