Seeking Advice for Broken Sleep Due to Frequent Bag Emptying

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Bernieb11

I have to get up three times every night to empty my bag. My sleep is so broken I am tired all the time. Anyone got any ideas?

NJ Bain

Bernieb11,

Welcome to the site! It depends on what type of ostomy you have. If you have an ileostomy, I would say try to start timing from when you eat/drink to when you start seeing output from your stoma. If your surgery is fairly new, you will see a lot of output in the beginning. But your body will adjust. It takes about 5 hours for food to go through me now.

If you have a urostomy, you can get overnight drainage bags to accommodate more frequent output so you don't have to constantly get up.

I'm sure other members will chime in here.

Bain

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Bill

Hello Bernieb11.

Welcome and thanks for posting. Getting used to having a new stoma is not the easiest thing in the world to manage and cope with. Losing sleep doesn't help either. 

There have been many posts on here in the past giving advice about what to eat in order to influence what comes out. The basic principle being the more you put in the more that exits. 

I always mention irrigation for those with a colosotmy who are able to use this technique as it gets rid of all the output at once and then you don't have those sorts of concerns until the next irrigation session. 

Another option might be to use a bigger bag at nighttime but (when I was using bags) I found that the weight of the output still woke me up so it did not work very well to resolve the waking up issue. 

Now I'm old, I tend to wake up to toilet regularly throughout the night and I have found that it becomes much more bearable if I can relax, take it all as part of what I need to do and once finished, go back to sleep as fast as possible. This way I lose less sleep than I did when I was concerned , annoyed, resentful, angry and frustrated about the necessity of wasting my time in such an aggravating way.  All those heightened emotions were contributing to my sleep deprivation and now I am managing that aspect, my sleep patterns are considerably improved.

I hope this helps.

Best wiszzzzzzhes

Bill 

scorsby

Can you not irrigate and not have the problem in the first place.

John

Adelaide

It took me quite a while to work it all out! I find that I have a bigger lunch than usual and a smaller dinner. The later you have your dinner, the more you will find you are getting up to empty. Also, if the meal is fairly heavy, then yes, you will be getting up more, but that's the price we sometimes pay. Believe it or not, your body will eventually "catch on", and you will find that you will be able to get back to sleep. Hope this helps...

 
Living with Your Ostomy | Hollister
kewl1

My answer will probably not help much but I want to say I can certainly identify with you. I got my ileostomy on August 16th. Like you, I am up about three times per night. I go to bed very late, i.e., between 1:00 and 3:30 am. I get very little sleep. I call it semi-sleep. I do have some Clonazepam 0.5's and I save them until bedtime and take all 3. I've been on the stuff for over 20 years, which at first I took 3 times per day, which was a great relief for my stressful job. By now, taking all 3 at once at bedtime does virtually nothing. I'll lay awake forever and be up changing the bag within 2 hours. I've been told that if I ask my Dr. for something stronger, she will just cut me off. I live in Canada and I think in the US it's much easier to get real sleeping pills. When I am awake in bed, my head is just spinning with crazy worries. I constantly worry about all the stuff I can no longer do and all the stuff I need to be doing but can't. I worry about everything from moving furniture to doing my income tax. I hate being unable to sleep.

I've had to learn to sleep on my left side only and never roll over. I can't get to sleep on my back. I do constantly worry about a leak but (knock on wood) I have never had a leak or accident yet, in or out of bed. I take Imodium to try to thicken the stuff up. Of course, the thicker it is, the fewer times I have to get up. But I would say that the 3 times is about average now. When I first came home, it was very watery and I would be up 5 times in a night.

I can have stuff go through me in two hours. I know that because my time-release Flomax pills no longer work because they pop out of me in two hours or four max. That has become my greatest fear now, i.e., I can't pee and am deathly afraid of a catheter after having had one a couple of times after the operation. I fear the catheter more than the ileostomy, cancer, and the chemo I'm taking.

I've seen videos on YouTube where they had larger bags for nighttime, but I can get by with my current situation even though it seems far from ideal. My feeling is the bigger bag, bigger potential accident. All the best and good luck.

kewl1

Dumb question but I am new at this. What is irrigation as it pertains to an ileostomy? I've seen the term elsewhere in other postings but don't know what it is.

bobby

Hello and God bless,

I have been a bag boy for 30 years now and the best I can tell you is to make note of the amount of time in hours of your discharge after eating a meal.

And then plan your last meal around this time frame of having to drain pouch. So you can sleep through the night, or at least most of the night without having to get up and go to the bathroom. I do this for other life events like flying, swimming, or anytime I know I will be somewhere for a time period and

do not want the hassle of going to the restroom so much.

Take care,

Bobby

Bill

Hello kewl. 

It's not a dumb question at all so I will try to answer it to the best of my ability.
Irrigation only applies to people with a colostomy because they have more of the colon remaining and the process of pouring water into it and flushing it out  has a chance of working effectively because it then takes some time for the lower colon to fill up again, which in turn gives the person a respite from the constant output.  This process apparently does not work with ileostomies because there is a lot less of the colon left and the feaces is much more watery anyway, leading to it constanly outputting whether irrrigation  takes place or not. 

I am sure there are more technical explanations, but this is how I understand the situation to be. There may be many other reasons why people are not suitable to try irrigation but for those who are successful at it, there lives become less encumbered by the vaguaries of bag wearing.

Best wishes

Bill

 

kewl1

Thanks, Bill. Fascinating. I have to take Imodium all day to thicken mine up with my ileostomy. And what comes out just looks a lot like chewed up food.

Immarsh

Hi all,

I have had my ileostomy for more than 50+ years, back from when I was a kid of 15.

Back then, just getting the bag to stick on for a few hours was a challenge...

Over the years, supplies got better, and as long as I kept a mattress pad on my bed for the occasional leak, I didn't worry about much.

Getting up 3 times a night was a vast improvement over the 40-50 times a day with ulcerative colitis... I'd say that once or twice a night was the norm, all through my 20s and 30s as long as I ate sensibly and early enough without late-night snacking.

What's changed for me over the last 5-10 years is my "normal digestion" has increased gas production.... Sometimes, I wake up to a full pouch....of air...

I live and sleep alone, so sometimes, I just "open the pouch and let the air out and go back to sleep.

Caution... make sure you fasten the pouch closed.... I've done it in my sleep and woke up to a mess.

Over the last few years, I've developed some anxieties that have kept me from getting a "good night's sleep," so now, before bed, I listen to "mindful meditations" to quiet my brain.....stop the worrying and anxiety over things I can do nothing about. I also give myself nightly foot massages since (if you believe in reflexology) all organs/systems end in the feet. I do use some medicinal "help." Lorazepam at night puts an end to my night terrors and crazy dreams (Loved the one of your stoma falling off!!!) I also take melatonin......which has helped me stay asleep. Between all three and a lot of rational thought, I've managed to enjoy the amount of sleep I get.....even if I have to get up during the night. I love crawling back into my nice warm bed.....close my eyes and listen to the quiet.....and be grateful that I'm not in pain... Sometimes, I listen to a meditation again or put on music or one of my audiobooks. "For me, being grateful" that things are as good as they are......is a challenge.... but I know I'll never forget those years of pain and disease when life wasn't so good or so easy.... Best regards... Marsha

NHMike

What I've found that works:

I have alarms on my watch for 1 AM and 4:30 AM and empty the bag at those times, whether it needs it or not. I'm usually able to get back to sleep quickly after these bathroom breaks and I monitor my sleep patterns carefully to make sure that I'm getting enough sleep (my watch does the monitoring and generates fancy charts about my sleep quality).

I try to avoid a big dinner or a big dinner all at once.

I sleep on four pillows to generate an angle for my upper body so that the waste doesn't pool near the filter.

freedancer

Also, please remember there are no "dumb" questions in here, ever. :) I have had so much help by asking questions here. Everyone has been so nice to me. I was so depressed and felt my life was destroyed after my emergency surgery, but everyone in here helped me to see that nothing is destroyed, just different. So ask away!! All of us will help out if we can!!

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