UC'rs Please tell me about your "normal" day

I'd just like to know what a typically so called normal day in your life is like.  Im off of work right now and in my very worse flare ever.  I havent ever been this worried about returning to work before.  I really have no life because of uc and work was always something i had to do.  When i was working i always wore a depends to work, my jobs ten minutes away and almost daily i would have to stop to go to the bathroom just to make it to work.  Many trips to the bathroom during  work for urgency not always a bm.  This is all new, i cant even imagine working with this horrible gut wretching abdominal pain.  How will i do it?  How do you do it?  Do you always have going to the bathroom in the back of your mind constantly?

when not flaring, I would have to go once a day at 10:30 like clockwork. In my worst flare (just coming out of it) was 25 times a day, mostly at night, I would be wiped out all day but still running to the bathroom. Luckily I was able to make it w/out stopping on my 45 min commute each way, though a few times I was sitting on my coat praying I would make it home (it's all highway and backroads).

I really hope you can get the right combo of meds to work for you. Also, I know people talk about diet but for me cutting out caffeine has really helped, it is the one thing that really makes me have to go (even decaf coffee can bother me, I think it's the acidity).

Let's see... what is a normal weekday like for me? Well, I get up between 5:00 and 5:30 a.m. I feed the dog, let her outside and then get ready for work. I'm at work by 7:30 a.m. I work all day and get home around 6:30 p.m. or so (some days it's later). Once I get home, we eat dinner (my wonderful husband cooks most nights), and then I usually read on the couch until I fall asleep. Weekends are different... no work involved... and we usually go out to dinner on Saturday nights... sometimes with friends, sometimes on our own. I usually clean the house or do some yardwork or other general household chores. I guess that's about it. I lead a pretty boring life!

Here's one idea to help get through the day if you're having a lot of pain... How about one of those hot patches for your tummy? I used to wear one to work for menstrual cramps, but I think they are also nice and soothing for UC cramps too.

Depending on your relationships at work, it can make it easier if people know. But that's totally dependent on what your situation is like. I shared an office with friends and during a bad flare, I just told them, "Look, if you're talking to me and I race out of the room, don't take it personally!" They were really cool about my occassional "disappearances" into the bathroom.

I would try to find little ways to distract myself from feeling like crap. A nice warm bath at night or a good book to read in bed or crossword puzzles or a new CD. Maybe you can find something that will bring a little diversion while you get through this.

As for a typical day now -- I'm feeling pretty good these days, so it's easy.
On a typical flare day? Several hours in the bathroom in the morning. And then the rest of the day, I'm calculating exactly how far I am from a bathroom at any given moment. I could probably draw you a map of my town with every public bathroom!

Hang in. It will get better!

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.

Butterfly1.....

Wow I feel your pain!  I have been diagnosed for just over a year and have yet to have a true remission.  Some days are better than others.  I am currently jobless!!  I resigned from a position that was horrible.  My boss and coworkers would make fun of me b/c I was in the br soo much.  I missed a lot of work and my boss went as far to ask me if i was writing my own drs excuses and asked other coworkers if I was putting this whole problem "ON" like i was faking it!!!!!  WOW it was bad so i quit and found a new job!  I thought this one would be great, I was up front about my problems and she acted as if she understood.  SO about 2 weeks into my new job I starting getting fatigued and bathroom visits were very frequent.  I was told that my position needed more attention and that my leaving so much to visit the br was interfering.  So here i am jobless, freaked out financially and feel very down.

I always plan my trips anywhere, grocery shopping etc, where the bathrooms are.  I worry that I wont be able to make it without an accident.  Been there too!  UGH!!

I could go on forever but what I would like to let you know is i totally understand and keep thinking positive that I will get better.

Hope you feel better soon!!

If you wanna chat more you can always email me!

Take care,