5:00 a.m.: Wake up to very full bag. Hold it underneath for support to go to the bathroom and empty. (Empty #1)
5:10 a.m.: Bible time.
5:40 a.m.: Spend some time blogging. Drink 1/2 liter of water.
6:15 a.m.: Bag is ready for another empty, but I decide to wait until I’m closer to leaving for work.
6:45 a.m.: Empty bag before heading to work. (Empty #2)
7:30 a.m.: Arrive at work and finish liter of water.
7:40 a.m.: Have oatmeal and coffee as I start work.
7:45-10:20 a.m.: Run to the bathroom 3 times to pee.
10:25 a.m.: Notice bag filling up again.
11:20 a.m.: Go to bathroom to pee (again) so decide to empty bag while I’m there. (Empty #3)
12:00 p.m.: Finish second liter of water.
12:20 p.m.: Eat lunch. (Today it’s a burger, Sun Chips and a half-liter of DripDrop… Not my healthiest example.)
1:15 p.m.: Notice bag filling up again, but not ready to empty yet.
2:15 p.m.: Bag starts getting heavy. Go to bathroom to empty. (Empty #4)
2:20-4:00 p.m.: Boring work stuff.
4:00 p.m.: Drive home.
5:10 p.m.: Finish third liter of water.
5:30 p.m.: Eat dinner. (Homemade chicken burritos.)
7:30 p.m.: Bag is getting full again, but I wait to empty.
9:05 p.m.: Final empty before going to bed. Lots of gas this time. (Darn burritos.) (Empty #5)
*This represents a fairly typical day for me as far as care for my ostomy. (Although I am definitely not always this good at drinking my goal of 3 liters of water a day… I must’ve been extra motivated since I knew I was tracking myself that day!) Most often, I empty twice in the morning, twice at work, and twice once I’m back home in the evening. Of course, there are the days when I have to change the bag or something like that which adds another level of care. And this is specifically dealing with an ileostomy, so I know that care for a colostomy or urostomy would be different. I know this is not necessarily a “typical” day for everyone, since all ostomies act differently. Early on after my surgery I would have to get up during the night to empty, but I don’t usually have to do that any more.
My point here is to show that having an ostomy does not have to rule your life. You may still go to the bathroom more often than the average person, but for Crohn’s disease and ulcerative colitis patients, I promise you will spend a lot less time in there than you would have before the surgery!
13 Comments
That’s a pretty cool read! Do you use a standing desk at work? =)
January 7, 2015 at 3:46 pmThanks, man. And it’s one of those GeekDesks, so it can be standing or sitting. I always try to stand for several hours a day, if not the whole day.
January 7, 2015 at 3:53 pmThanks.
January 7, 2015 at 7:01 pmThis is great to read! I’m 7 months post op.. Been back at work for 4 months.. My days aren’t quite that smooth yet.. Some are better than others. How long before you had days that go smoothly? I’m quite a bit older than you(probably old enough to be your mom!) 🙂
January 7, 2015 at 7:14 pmHi Barbara:
January 10, 2015 at 4:42 pmThe days get better, it just takes time, and patience. The knowledge that your initial days will not be perfect ant things will happen and being prepared for those things, with understanding co-workers who know what you’re dealing with. I dealt with mine with a lot of humor in the early days, and not to say there weren’t tears too on some days, due to frustration, but in the long run…. ATTITUDE, ATTITUDE, ATTITUDE, and persistence. Wrap your head around the fact that you have an ostomy and that you need to prepared for the good, bad and the ugly when they happen, and pay attention to your body. It will help you learn when its time to deal with the aspects of your ostomy and in time it will regulate itself.
Find a support group or a support buddy who has the same type of ostomy. I had one and even though she was 2000 miles away, I could call her and talk and be candid and even cry and she understood.
My time got smother at about the 1 year mark, as I learned and the healing of a stoma continues for at least 1 yr to 1.5 yr after the surgery – size may change, shape (if a hernia is involved). Each time a physical change happens, it changes how you deal with your ostomy sometimes. At some point the appliance (bag) may need to be changed to some other brand based on what happens with your skin.
They are things you roll with the punches and get your CWOCN wound care referral when you need help.
Good read/laugh! I’m 21 months post op and mine have slowed down, sometimes i empty in the morning, go to work and don’t need to empty until the evening. They are
January 8, 2015 at 1:58 amthe good days!
My day is similar but i drive a bus all day,
January 8, 2015 at 2:10 pmdrink 4 litres of squash empty when i pee,
change my bag every night no sore areas,
best of all no sore bum or piles dont miss that one bit,
Illiostomy just a diffrent toilet routine
I am a bus driver to Keith just new to a stoma had surgery 4 weeks ago this Monday was just wondering when I am fit enough and go back to work is it not much of a problem if your bag needs emteyed and your not going to be near a toilet for at least an hour or to
October 30, 2015 at 7:51 amI just automatically empty every time I go to pee. So even though that makes it 8-10 times a day, I’d still take my bag over UC any day!
January 9, 2015 at 5:29 pmI am 7 months into my colostomy surgery and it has been a living he’ll 14 bag changes in 18 hours. Son is red raw beyond belief an can’t get the dam wafer to stay put. Our have tried multiple supplies. Lost over 50 lbs. Wondering if that might have something to do with it. My life is horrible, have been a prisoner in my own home and my honey is insistent that I will be in diapers for the rest of my life.
January 20, 2015 at 10:05 pmAny advice, words of encouragement?
Love this blog, good for you! It is interesting to find out what you do as your daily routine! If you need some extra help, Trio Ostomy Care’s products have proved very helpful for me in the past! Here’s a link to their site if you want to find out more:
January 22, 2015 at 5:48 amhttp://www.trioostomycare.com/
Was in the hospital for 11 days after emergency surgery. Home for 4 weeks. The last few days I’m finally making progress instead of messes. A sink full of soaking clothing (no washer/dryer) bears silent testimony. Looking at various panties and wraps. Can you recommend? Have looked at osto mysecrets and awestomy,
May 25, 2016 at 8:16 pmGreat article! I am still on medical leave for my colostomy and am nervous about going back to work. Good to see you don’t have to empty every time there is a little something in your pouch.
July 28, 2016 at 2:51 pm