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

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butterfly1
Regular Member


Date Joined Jun 2007
Total Posts : 112
   Posted 11/20/2007 10:51 AM (GMT -7)   
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?

CheesePuff
Regular Member


Date Joined Oct 2007
Total Posts : 92
   Posted 11/20/2007 11:17 AM (GMT -7)   

Dear  Butterfly,

I know how you're feeling, but trust me it won't go on like that for ever. I was diagnosed over 15 years ago (and I'm only 30 years old now) and have suffered two serious flare ups. The first one was the worst and took me a while to get under control, but once you and the docs have found the best medication for you, they really start working.

I was in remission for many years and even though I was aware of the CU, it never stopped me from living my life to the full, emigrating twice etc :)

When I'm flaring, it's hard not to become house-bound and be scared to leave the security of knowing the toilet is close by, but it will get better!!

Even after I'm finally getting better after my latest flare, I still now where all the public restrooms are cool I have a 15 minute journey into work and sometimes have to stop at the restrooms. It's embrassing at work to run to the rstrooms constantly, but I found that once I explained to my work people wwhat's going on, the anxiety levels decreased and I didn't need to worry about it constantly.

Best of luck and hopefully your medications will start working soon !


UC since 1995
Total Colitis diagnosed May 2007
100 mg Imuran
3 * 800mg Asacol


Beth75
Veteran Member


Date Joined Jul 2007
Total Posts : 2148
   Posted 11/20/2007 11:36 AM (GMT -7)   
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).
Beth, 32
UC Diagnosed March 2000 (30 cenitmeters)
Azathioprine 200mg 1xday nightly;Hydrocortisone e's tapering, Calcium and Vit D 500mg 3xday, Multi Vit, Folic Acid 400mg 2xday, Probiotics.
Minimal Change Disease (Kidney Disorder) Diagnosed Sept 2007
Prednisone 60/40mg alt days 1xday, Simvastatin 20mg 1xday, Diovan 160mg 2xday. Potassium 600mg 2xday, Fosomax 70mg 1xweek. MCD may be from hypersensitivty to 5ASA drugs.


princesa
Veteran Member


Date Joined Aug 2007
Total Posts : 2198
   Posted 11/20/2007 12:07 PM (GMT -7)   
I agree with Jepa. It does eventually get better. When I'm in remission, which I have been most of the time, once I got past the first couple of years, I go to the bathroom once or twice a day and don't give UC any thought beyond taking my maintenance med, supplements and being careful with my diet. And all these things have become second nature.
Diagnosed with ulcerative colitis spring 1999
 
Therapeutic dose sulfasalazine, back on a pred taper for first flare in years. Down to 10 mg and feeling much better.
Probiotics, l-glutamine and fish oil caps. George's aloe vera juice and Mucosaheal.
 
 


expecting226
Regular Member


Date Joined Jul 2007
Total Posts : 402
   Posted 11/20/2007 12:35 PM (GMT -7)   
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!
Current Medications:
- Asacol (4 pills, 2x per day)
- Rowasa (1 enema daily, as needed)
- Folic Acid (1 mg, 1x per day)
- Calcium (600 mg, 2x per day)
- Prenatal Vitamin (1x per day)


kim123
Veteran Member


Date Joined Jul 2006
Total Posts : 1201
   Posted 11/20/2007 4:39 PM (GMT -7)   
Just wondering, what changes have you made to see if it would help your symptoms? You sound just like I used to be. I hated having to always know where the nearest bathroom was when I went out, and/or praying I would make it home in time if I was on the road.

julee70
Regular Member


Date Joined Oct 2007
Total Posts : 486
   Posted 11/20/2007 8:38 PM (GMT -7)   
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!
-------
UC for the last ten years
Current Meds: 6MP
Past Meds: You name it; I've tried it.


Red_34
Forum Moderator


Date Joined Apr 2004
Total Posts : 23549
   Posted 11/21/2007 5:38 AM (GMT -7)   
I don't work because of my UC. I used to be a payroll accountant but quit after having severe flares and unsympathetic bosses. I've tried going back to work on and off but just GOING to work caused stress because of my UC so I always ended up quitting - vicious cycle! So now I just stay at home and take care of the house, my kids and my gma. I try to lead a stress free life as possible with teenagers! But typically my day consists of waking up, having my morning coffee, going to the bathroom and depending on if I'm flaring or not - I can go several times. When I'm not flaring I only go once or twice. Take a shower, clean house, run errands, make dinner and go to bed. Typical everyday stuff. Every once and a while I go out to dinner with family or friends, go to the show or whatnot.
 
Oh and I forgot to mention is that when my colon is quiet, so is my mind.  I don't give my Uc another thought.  But when I'm flaring, then I scope out places for bathrooms just in case.


 @--->--SHERRY--<---@
~Left sided Uc -'92 - Colazal (9 daily), 6mp (50-75mgs), Prilosec, Biotin, Forvia, Pro-Bio, Hydrocortisone enemas**Unable to tolerate Asacol, Rowasa or Canasa** 
~Allergies - Singulair, Astelin(got the script - just haven't tried it yet!)~
~Secondary Reynauds Syndrome - '04 - Norvasc~
~Fibromyalgia - '06~
@--->--Moderator for Allergies/Asthma and Co-moderator for UC--<---@
PLEASE HELP HEALINGWELL CONTINUE TO HELP OTHERS BY CLICKING HERE: DONATE
 
 
 
 

 
 


kazygirl
Veteran Member


Date Joined Sep 2007
Total Posts : 955
   Posted 11/24/2007 6:14 AM (GMT -7)   
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
 


theklep
Regular Member


Date Joined Nov 2007
Total Posts : 75
   Posted 11/24/2007 7:17 PM (GMT -7)   
Well I have mild UC and have managed to get my last flare under control with more oral meds and Rowasa. Normally I live a normal life I pay attention more to my BM's and heed Quincy's advice of "if you see something that looks like symptoms hit it with Rowasa ASAP". That usually will put me in remission faster than just seeing if they are just a peculiar movement. It differs for everyone. When I am in flare though I stop all abrasive stuff on my stomach, caffeine, alcohol, fermented things. Just chicken and rice for however long it lasts and just treat it with meds. It all you can really do depending on severity. I do feel the pain of those of you who can't go into remission because I think a month straight it miserable.
Jeff, 23, Diagnosed July 2007 probably had it since 2005 but no real symptoms till July 2007 *Left Sided UC*
Lialda - 2.4mg 2x Day
Rowasa 1x (for spot treating and flare ups)
Centrum Multi-Vitamin 1X Day
Lexipro- 1x Day 10Mg
Ambien- 1x Day 10mg
Omega 3 Fish Oil- 2x Day


uclife
Regular Member


Date Joined Aug 2007
Total Posts : 50
   Posted 11/25/2007 11:56 AM (GMT -7)   
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,
Amy
31 yr old
Pancolitis since oct 06
waiting on that remission
asacol 12 daily, protonix, iron supplement, ativan
Trying to stay positive!!
 


butterfly1
Regular Member


Date Joined Jun 2007
Total Posts : 112
   Posted 11/25/2007 4:57 PM (GMT -7)   
Wow guys thanks for all the responses! Helps to know im not alone in this crazy life! Ive been doing good up to about an hour ago, i started having diarrhea. I wanted to try and go back to work tomorrow but now i dont know. Have to wait and see what tomorrow brings. Hope everyone is doing good and hanging in there!

uc x 20years
3 colazal a day
ativan as needed
ambien 1 at night
vicodin as needed
pepcid
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