Sleeping with an Ileostomy - Tips for Restful Nights?

I had my surgery in March. Since then, I haven't slept through the night. I'm so exhausted. I used to wake up every hour to dump, but now it's longer...maybe 3-4 times a night. Will this ever change? How do you sleep through the night?

Hi Newbie,

I hear ya... been there, done that... still doing it! I've got to use the sunlight to get stuff done outside (just came in to grab a burger and feed the pooch), but I'll explain it all to you later. You may not like the answer... but it's better to know than to not. Or so they say! Hang tight... I'll be back as soon as it gets dark and everything is fed.

Regards,

Bob

Ok newbie........I'm back. Sleep. Well, you've found out that it's challenging.........how you deal with it depends on your weight and your ability to maintain that weight. Like I said earlier, I've got 140cm of my small bowel left, I believe you said you had 130cm....or something like that. I just happen to have enough bowel to be able to support my 190 lb weight, but not an ounce more. I'm not sure where you're at with maintaining your weight, so I'll cover both cases.......where you can maintain it...and where you have a little extra on you. If you can't maintain your weight now........you'll be heading down the TPN path, which I won't scare you about now. So...........

You've also probably figured out that if you stop eating for oh, 3 or 4 hours, your bowels will continue to secrete bile.......that greenish liquid you find in your bag when you haven't eaten. They do that around the clock, but normal folks have it re-absorbed back into their bodies by their colon. We ain't so lucky. Since you're a newbie 'short gutter' stuff you eat will move through you very quickly. As your bowel adapts to its new shortness transit time will increase a bit. Don't get your hopes up......but it does get better. So for now, if your weight is good, and you can go for a number of hours without eating and losing weight.....you can stop eating a few hours before you want to go to sleep. By then your bowels are fully empty......and the only thing going into your bag will be bile. I secrete about 1/6 of a bag's worth of bile every 2 hours or so. So if your gut is completely empty......you should be able to get at least 5 or 6 hours of shuteye without filling your bag to blowout levels. You'll need to sneak up on this by setting your phone or alarm clock each night to give you an additional half hour or so of sleep, and see how full your bag is when you get up. If you absolutely need to get 8 hours of sleep then you'll need to get yourself a bigger bag, or an irrigation sleeve with a knot tied on the end. Again, that's if you can easily maintain your weight and not eat for a good while before bed.

Now if you're like me and have to consciously work at maintaining your current weight........then you need to eat longer into the night.....and not sleep as long if getting up to empty your bag isn't feasible for you. I've found that you can train yourself to get by just fine with very little sleep. I know, it sounds nuts.....but it's real and not that hard to do. I've talked to a few ER nurses who confirmed they do the same thing, so it must be one of those well-kept secrets. Anyway, for folks like me who have a hard time maintaining weight and need to eat almost around the clock....the only way to get used to not sleeping.....is to not sleep. At first you'll be a bit of a zombie.....just no getting around it. But then you'll start to notice you're not as tired in the morning as time goes on......and you can even pull an all-nighter every once in a while with no adverse effects. I'm not sure how or when you hydrate, but I hydrate at 2:30 am each night. I typically stop eating around midnight, and by 2:30 am enough of my bowel wall is unoccupied with food absorption to switch over to hydration. I drink a liter of my Oral Rehydration Solution over the course of an hour......and then go to bed. None of the liter of liquid comes out........it all gets absorbed....so I hit the sack at around 3:30 am or so.......some nights I'm so full of energy at that time I just work on another project for an hour or so......and then grab 2 or 3 hours of sleep.

I know, it's not the answer you wanted to hear.......but life doesn't really care. So those are your options, assuming you can keep your weight stable. Bigger bag or less sleep. I told you that you were in for a wild ride being short gutted............so hang on........we're just getting started!!!!

PM me anytime........it's why I'm here!

;0)

Bob

You're right...not what I wanted to hear. I'm still losing weight, so I'm still trying to figure out eating and hydrating. I try to eat by 5:00-5:30 and stop drinking by 6:00pm so I can go to sleep by 10-11. But I'm going to try what you do and try drinking after I eat and drinking that within an hour. What's your oral rehydration solution? I'm using Liquid IV from Costco. Is that the same thing? I drink one of those, but I'm drinking at least 64 oz daily. I've been hydrating all damn day, so I think that's the problem. And I have noticed if I don't eat for a while, then the bile keeps coming. I tried not eating so I can change my pouch when I'm not active, but it seems to be more active when I don't eat because of the bile. I didn't understand that. How did you learn all this? nbsp
Your responses are always so helpful. Thank you. nbsp

Hi Newbie08, I hope you can get things worked out. I have a colostomy so my problems are different from yours and Bob's. We call Bob our resident Dr, LOL. He does have a lot of information on a lot of problems. Like you, I have wondered how he knows so much. The same thing does not always work for everyone, but just try the advice given until you find what works for you. Just hang in there and it will get better. Best wishes and stay safe.

Words of Encouragement from Ostomy Advocates I Hollister

Hi newbie

A few months after all my ops, my system slows down. I'm up only once during the night now. The alarm goes off at 3am every day.

You will get over this, but it may take a while.

I have had my ileostomy since 2018. I learned that you have your larger meal around lunchtime and have a small dinner meal. Try not to eat after 6pm. That will allow your body to empty before you go to bed. If you get up to go to the bathroom at night at a regular time, you can also empty then even if it is just a little. I find if I slip up and eat later, I end up emptying more. My stoma typically slows down at night. I guess I trained "Maxine" to behave. She is most active for the first couple of hours in the morning when I am having my coffee. As you get used to everything, and you are very new to this new way of life, you will learn how to change around your eating to fit pretty much into the best routine for you. I can relate to not sleeping through the night. I originally had my first ileostomy in July 2017. For 7 months after having it, I had horrible cramps and very little output. I had to have emergency surgery with the first one and almost died. I was in ICU for three days and on the surgical ward for 10 days. Then suffered with 7 months of pain, thinking that was supposed to happen because I was healing. However, my stoma had strictured and all my remaining intestines were backing up. I finally went to the ER and was rushed into surgery again where the doctor had to build a new ileostomy. It was very stressful, and I was split open quicker than the Red Sea LOL!!! I am doing ok now. It took a long time to learn what I could eat and not eat. I loved vegetables, especially raw ones and mushrooms. Well, I learned Maxine was very picky and went through a few blockages before I learned there were things that I couldn't eat. I wish you the best! Just listen to your body. It will tell you what it needs. We are wonderfully made and very resilient beings. Take care and God bless!

Hi Newbie! I am much under the same conditions as a free dancer. I am able to sleep through the night on many occasions, but the norm for me is once a night. I do not eat or drink after 9pm, so my pouch is not full. I go to bed at about 10 or 11 pm. I am generally a light sleeper, and my dog sometimes wakes me because he wants to go out and do his business. It's only natural that I take time to empty my pouch. Bob says it depends on your weight. Maybe so, but I am 197 lbs and can manage without ingesting so much food. I eat just enough to satisfy my hunger. I drink lots of water to stay hydrated. I can also understand having to get up more often if your small bowel is short like Bob's. I would imagine a short small bowel would be very hard to manage. Kudos to Bob! I must be feeling lucky after 11 surgeries to have as much small bowel as I do. Bob is correct about the bile we secrete. Unlike many on this site, when I wake at 6 AM, I empty my pouch and I could take a shower with nothing coming out. It stays that way until I get to work and have my breakfast.