Sleeping Through the Night with an Ileostomy - Tips?

I would love to know how other ileostomists manage to sleep through the night without having to get up to empty.

I have to empty one to three times. I have tried having my last meal around 6 PM but still have to empty at least once. I don't set my alarm. I'm so tuned in to my bag that it even encroaches on my dreams, so I go to the loo when my bag's full to empty.

I've never seen anyone on here with an ileostomy claim that they get 8 hours of sleep a night, but good luck to them if they do.

The most I've got is a solid 6 hours (and that was just the once when I was jet-lagged and hadn't eaten for ages).

On any given night, I get about 5 hours of straight sleep, with an unload just before I go to bed. Occasionally in the morning, it's just gas, but I tend to get up anyway to go to the loo. I've been caught out before by burping the bag before rising to find not just gas but a sh*tload of froth.

I'm a light sleeper anyway, so it doesn't bother me. I don't feel any less energetic during the day with little sleep, and if I do, I just pop a B12 capsule and am good to go again. I too get those dreams, the ones that are quite alarming are where I'm going to the loo the "old-fashioned" way in my dream and yes, wide awake to find a huge football on the side! 💨😊

P.S. I honestly think these "reports" that every human on the planet HAS to get a certain amount of hours a night or they can't function are bloody ridiculous. Even in medieval times, folks apparently used to get up in the middle of the night, potter around a bit, do a few chores, have a natter, and then go back to bed for a second sleep. Maybe our ancestors were onto a good thing! 🙂

G-Day Megs, yes, that's an ileostomy, it sounds like it. For me, I get up about 4, sometimes 5 times in the night, and as I am retired, I am able to sleep in till mid-day because I don't normally finish emptying until about 6 AM, and that's when I go into a deeper sleep. Sweet dreams, regards, IGGIE

Hiya Megs.  Expecting to sleep a straight eight hours (or even six, or five...) is a fantasy for someone with an ileostomy.  I never eat past 6 PM and I'm still having to empty 2 to 3 times during the night, so 2 to 3 hours without interruption is the most I ever expect.  For some reason, last night I went four hours sleeping, very rare, and awoke with my bag about to explode.  Over time, your body and your mind adapt and adopt and you become able to fall back to sleep when you return to bed.  Or not...   it's give and take.  

Hello Megs

I try not to eat past 7 PM, last empty about 11 PM, my alarm goes off at 3 AM for another empty, then sleep till 6:30 AM.

My digestive system seems to slow while I am asleep these days, and I have slept through, but it is very rare.

How to Manage Ostomy Leaks with LeeAnne Hayden | Hollister

I am extremely fortunate when it comes to adapting to sleep, or lack thereof, LOL. I have never known sleep longer than a 3-hour stretch since childhood, beyond surgeries and some admissions due to T1 diabetes. Tech has made life easier with insulin pumps and CGMs, although I am still checking my CGM to see my sugar all the time. I typically go to the restroom when I wake to check out of habit since childhood, so adding in emptying the ileostomy during those times wasn't too much extra for me to adjust. I have yet to hear of anyone with an ileo that is able to sleep that long straight through, and I know most T1s aren't able to! Once we reach a certain age, I think increased bathroom trips are part of life, no matter the disease/ostomy, LOL! There is a new leak detection system I saw advertised that may be helpful to some; I personally won't try it, I have enough medical devices, LOL!

 

 

Agree - As one who was always able to sleep 8 hours straight through, and now I am mostly like you as you have described your own experience.
Loved the word "natter"; had to look it up and now wondering if those medieval folks had group chats in the wee hours... I'm guessing that sleeping on stone slabs would disturb a straight-through sleep even without an ostomy! :) jb

Hi all, I've had my ileo for 30 some years and maybe in that time it has been trained to not have output as I don't empty during the night but have burped it due to foods that I ate during the day. Usually, the only reason I wake during the night is due to joint pain or a dry throat and needing a sip of water.

As a 76-year-old male with a prostate gland and moderately severe osteoarthritis, sleeping through the night is a distant memory. I am normally up every 2 hours. However, I do not always need to empty my bag. Usually, that only happens once and then again upon arising. I do usually burp the bag, though. I will be the first to admit that I am a lucky ileostomate. :-)

Daniel

I eat until I'm done, depending on the night. I burp my bag a couple of times and go back to sleep each time. I'm too lazy to get up and know that I'm taking a risk sometimes, but I've been lucky so far.

An eight-hour uninterrupted sleep? Not sure I remember what that was like! Even before my ostomy, I was up two to three times nightly to pee, so things haven't really changed. It just takes me a little longer because I need to empty at least twice. I do fall right back to sleep most of the time though, so it's something I'm pretty used to.

Terry

Hi Jo, I've found that the amount of sleep one needs really does vary. I know people like you, who function well with little sleep and don't feel any less energetic. I'm not one of them. I can function pretty well on six hours if it's really good quality sleep, but anything less than that, and I'm pretty much dead on my feet all day, very low energy and my mood is affected big time. Seven to eight hours is ideal for me. I am really envious of people like you!

Terry

Hi all,

Thanks for your replies. It's sort of good to know I'm not alone. I do wonder what it would be like to get more sleep, but if that's the only drawback to having an ileostomy, then I count myself very lucky.

Hi M,

This topic has come up quite often on here, so you might want to do a search for more info. They do make larger ostomy bags that you can wear at night to hold more output, and some have discussed using an irrigation sleeve while they sleep instead of a normal ostomy bag. The sleeve can hold a ton of output, but you have to jury-rig the bottom since there's no closure. I'd also check with Bill, as he's the king of DIY ostomy hardware and might have come up with something that might help in your situation.

;O)

Hmm, 4 whole hours? Sounds like a Nicole fantasy to me. 🤦‍♀️

Beware the squirts!! :-)

I have to ask. What is a "Nicole fantasy"?

Daniel

Well, that was in reference to Henry's fantasy post dated Jul 25, 2024, 4:38 am...@4:38 am...hmm, let me do the math here (my worst school subject). That would be Florida time, so it was about 2:38 a.m. Colorado time - given your 2-hour pee time intervals, you probably missed that one 🤣🤣🤣

No, I saw it. Dr. Memory got me again.

My husband has an extremely high-output ileostomy, and I was getting up every 2 hours at night to empty it. I absolutely need 8-10 hours of sleep. I found a night bag! Coloplast is the maker, and the numbers are 2836 & 2837. I initially found it on Amazon. So, we now change his bag to the night bag every night and back to the day bag in the morning. It just takes a second, and we both can sleep all night. Hollister has a night bag, but if your output is not all liquid, it probably won't work. The bags are pricey, but I drain it each morning, rinse it out, and use it for several days. It might not work for everyone, but it was a game changer for us.

 

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I take Imodium about an hour before I go to sleep. It cuts my bathroom trips way down. Now it's usually one trip and one burp a night.

I also take Imodium if I'm planning to go out of the house.

Wish someone would come up with a gas pill that could be put right in the bag! That's a challenge for any of you chemists out there.

Thank you. I will try Imodium. I never thought of that before, even though I keep it to use when my output is completely liquid due to a tummy bug or equivalent. My output is usually thick porridge consistency. I have a filter for gas, but it usually gets blocked.

I have to empty my husband's 2-year-old ileostomy as he had a prior stroke which affected his dominant side. We initially got up every night around 4 AM. I was finding it harder and harder to fall back to sleep. So we started emptying around 11:30 and not again until he awoke in the morning. Some mornings it has looked ready to explode with gas, but so far we've been lucky.

Bless your heart and helping hands 🫶🏻

jb

There are two things I do for sleep. I stop eating by 6 PM and I use a cannabis edible. I make my own with indica and lavender.

Oh, and a third thing: I take a Bentyl and a CA Mg Zinc, with Baclofen too.

 

Hi Meg,

Most of my output comes out overnight. I've always been a great sleeper, so getting up twice in the night was never going to work for me, and I could feel my mental health becoming precarious. I now have a Coloplast two-piece system, where I snap on a bigger bag at night and change back to a smaller bag during the day. It's been a game changer. Knowing I don't have to get up to empty has changed everything, and I can deeply relax again.
I did try Hollister, but the filter was not as good, so it kept filling up with air - the Coloplast ones work a lot better for me.

Sensura Mio High Output Click Ostomy bag 2-piece.
Good luck!

 

I use a 2-piece Sensura Mio Coloplast bag with a spout. At night, the spout allows me to connect to an overnight bag for the stool to empty into. If I did not have the overnight bag, I would have to get up multiple times at night. If you need more info, please call me at 4432430317 or email at sassy222@comcast.net. My name is Carol.

Hi FernL

I've never tried a two-piece. It's something to consider. I can order some samples to try this out.

Thank you.

Hi Judiprescott17

Very interesting! I keep Baclofen in my medicine cupboard for times when I have issues with motility and pain. I wouldn't know where to buy cannabis edibles and am not sure what they do. I wouldn't risk growing it here as it's illegal. I assume it slows everything down and gives you a beautiful sleep!

Thanks for your advice.

Hi Doe1mama

You're doing a great job helping your hubby. I was thinking you could try some of the advice given to me on here before his bag explodes in the morning.

I always use puppy training pads to protect my bed just in case. They are very reasonably priced and last forever with me. I sleep better knowing my sheets are protected, and I slip a square inside my pants at night.