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Hey Ostomate.....Tell Me HOW You Sleep!

Posted by loverofmusic, on Mon Aug 12, 2019 4:21 pm
dadnabbit wrote:


I'm sure this is NOT the answer you are looking for but.....I haven't slept in a bed in FIVE years.  I have an ileostomy on the right side above the waist line.  Two hernias create their own issues for adherence and mobility and I have found it is just not worth the effort to lie down.  Every time I lie down, whether flat on my back or on either side, I end up covered in $#!!, so I gave up destroying matresses and washing protectors pads, sheets and blankets every day and decided to sleep in the recliner because at least I don't end up wearing it. I haven't slept more than 2 hours at a stretch since surgery in 2014 even with meds.  My case is NOT typical as I went into the hospital for a clot in my right calf and left ICU 22 days later, after allergens administered against my will, missing a gall bladder, right ovary and large intestine, none of which NEEDED to come out when I entered the hospital.  The doc believes that my "inability" to sleep is the result of transitional PTSD, (ya think!?!) but the problem of leakage certainly doesn't help.  The doc and I are hopeful that eventually time will allow some peace in my mind.  Right now I wouldn't enter a hospital if I were having a heart attack.  My feeling is that I would rather roll my @$$ out into the street where I could see the truck coming at me....  

Hope you are having better luck than I with your sleeping.  Smile 



Omigosh, Dadnabbit...I have to say that i havent met anyone yet on this site that has an ileostomy due to other too...that is why I have had a temporary ileostomy since January of case is absolutely not typical either...i understand completely about the 2 hours thing, and wow do I ever relate....


Reply by loverofmusic, on Mon Aug 12, 2019 4:31 pm
w30bob wrote:

Hi Guys,

  Thanks for the replies!  Longroad, that IS a good idea. As Maxwell Smart would say.........."ahhhh....the old horseshoe pillow around the ostomy bag trick".  I've got one of those pillows and looked at that damn thing a thousand times and never thought to use it like that.........brilliant! 

  Bill.....don't sweat it.........they'll keep flowing.  I intend to pick this forum clean of every bit of knowledge regarding ostomies that I can find.  You'll get sick of my questions long before I get tired of learning!!

  I'll give you guys a little more info on how I deal with the sleep deprivation.  I decided shortly after receiving my wonderful poop pouch that I wasn't going to fight the sleep issue.  So instead, I've been working toward optimizing the newfound awake time I now have.  Unlike you folks with plenty of bowels left, I can't stop eating at 8:00pm or so.  If my short gut gets empty I lose weight.  So I need to keep it busy almost all of the time.  Only on the mornings when I change my bag, which is every other, do I refrain from eating while awake.  On those nights I stop eating solid food around 1:00am or so, but never eat past 2:30am.  My intestines will empty and I'll get a good 1/4 bag of bile right around 8:00am, at which time I take my motility meds and have roughly one hour to jump in the pool, shower and change my bag.  If I can't get that done then I have to wait for my second shot of bile, then have another hour-ish to get-er-done.  But my bowels would have now not seen any food to digest in more than 2 hours and I'm making I'm losing weight.  So no sleeping late for me. 

 So back to optimizing......I try not to sit around watching TV.  It's on in the background while I'm doing stuff.  I've got a million projects going......I just bought an old Tiger Oak Sideboard, circa 1916, that I'm going to refinish, as well as a bunch of projects in-work.  So I hit a few of my projects until around midnight.  Then I do sit down to catch up on the news.  I usually nod off for just and hour or so around 1:00am and then I start my hour of rehydration.  By then it's 3:00am so I work the projects for another hour or so (until my output slows to where I trust no flooding will occur) and then climb into bed for 3 or 3 1/2 hours of wonderful non-REM sleep.  The alarm screams at 7:30am and I want to kill someone.  But I get up, mumble something like "do you want to go out" to the pooch and she pulls me up and down the block.  Then I put her inside, jump in the pool and WAKE UP.  People say you need 8 hours of sleep.  Nah, I'd say 8 hours of sleep is a pure luxury, one which I'm can no longer afforded. But I do get a lot of stuff done!  The way I look at it everyone else is sleeping 1/3 of their life away.........but not me....I'm getting by sleeping 1/5 or less of my life.  Just not by choice.  Maybe freedom of choice is over-rated.....but probably not.

 I'm thinking of designing an Ostomy Bed.  It'll have a big hole in the middle of the mattress with a collection drain under it.  Just pop your bag off and go to sleep!  Just don't tell the cleaning lady it's part of her daily duty to empty the pan! 

 C'mon Bill..........I've just given you some great words to make rhyme.........Maxwell Smart, horseshoe, deprivation, rehydration, Ostomy Bed, etc.  Whip us up something relevant that pertains to sleep......or lack thereof!


Thanks guys,


Hi Bob.... yep...I have to eat constantly or I get very sick and dehydated with my loop ileostomy. I have bile as soon as i wake up..I empty it 3 times per half hour, for most of the the day progresses, I am better ... I have to sleep on my side because otherwise I will have problems...

Reply by Newbie Dana, on Mon Aug 12, 2019 7:06 pm

I don't know if this will be helpful, but I sleep in a water bed, and have had no problems sleeping in ANY position, back, stomach, either side. And a good thing, too, as I am a restless sleeper and roll from position to position most all night. It's really hard to find water beds any more, and ever water bed accessories are hard to find any more to keep ours going. But I had a queen size water bed since the mid-late 80's, and my husband had one as well. When we got married, we mixed and matched parts to make the best bed we could out of the two of them. I have real trouble sleeping on anything else any more, and traveling with motels can be (literally) a real pain!

But the water bed provides support with give, so that even when I sleep on my stomach, I don't get excessiveback pressure against the appliance, or pressure that pushes it to one side like a mattress. When I am away from home, I can only sleep on my right side or my back so I don't put uneven pressure on my appliance or stoma (which is located on my left side). Oh, and full-motion - a waveless water bed might as well be a mattress in my opinion.

Reply by HenryM, on Mon Aug 12, 2019 7:41 pm

Bob:  I've had an ostomy my entire adult life.  I'm now 76.  Two things I'll mention.  One, I use massed pillows behind me so that I'm sleeping in a semi-reclining position.  This avoids nighttime leakage issues.  I never allow myself to be flat on my back.  Even in, say, a dentist's chair, I always request to be kept as upright as he can handle to do his job.  They always think I have a bad back.  Second, for years I have found that I fall asleep more readily if I lie on my stomach.  I double my pillow over and lay upon it so that it comes down to just above my pouch, leaving plenty of space above the surface of the mattress.  Typically, I'll wake and roll over in about an hour and fall right back to sleep.  I also use a neck pillow once I'm on my back which helps me fall asleep.  I've never slept thru the night.  I'm usually up one to three times to hit the bathroom.  Over the years, my body has just accomodated itself to this and I fall back to sleep more handily than the average person.  How often I have to get up during the night depends on what I've eaten the evening before, and when.  I typically won't eat anything after six pm, seven the latest, which increases the prospect of only one bathroom trip per night.  This is especially true if I'm going to be changing the following morning, since the longer I've been without eating, the more chance i can get the thing changed without incident.  Good luck.  Henry M

Reply by tmn86, on Mon Aug 12, 2019 7:41 pm

I totally agree,total pain in the a**!

i have only had my ileostomy for 3 mos. 

i sleep on my side and I find myself constantly waking up to make sure I’m not crushing this stupid bag!

I look forward to hearing any responses you recieve,, good luck.

Reply by w30bob, on Mon Aug 12, 2019 8:25 pm

Hi Guys,

  Thanks for the comments.  Henry, I do the same thing........I put my longest pillow under my right side chest when I lay on my stomach.  The bottom of the pillow stops just above my stoma and the bag has a nice space between my body and the bed/floor to hang in, so to speak.  TMN, you've just given me an idea.  I guess most have seen the "Stoma Guard" on the web.  It's a piece of thick aluminum with a wavy bend in it so it goes over the stoma and allows the waste to drain straight down into the bag.  What I'm thinking about is something like that, but for sleeping.  Think of straping on an aluminum cage that fully covers your ostomy bag.  If you accidentally roll over on your bag the cage will protect it and you'll feel the cage press up against you so you'll wake at least enough to roll the other way.  That is until you get used to sleeping "on" the cage, which won't be difficult if you use the "pillow under your side" trick that Henry and I do. 

  As for the having to get up during the night I remember reading somewhere that they make high volume ostomy bags.  No one has replied saying they just slap on their 1/2 gallon nightime ostomy bag and can sleep thru the no one using the big bag?  I rememeber seeing it somewhere online because I remember them showing it next to a normal size bag and I thought who the hell is going to wear that outside?  But for nightime sleeping it sounds like a good idea, unless I'm missing something.  Ok.......I need to get designing!!  But keep the replies coming......they all inspire. 



Reply by HeyHey, on Wed Aug 14, 2019 5:28 pm

Hi, this was a huge problem at first. I also find convex works much beter to hold everything in place. I even use a ring with with convex. One of my doctors suggested an extra large back for the night time. So I use a regular bag for the day and the high output pouch for night. Sometimes I can go 6-7 hours. It does get filled with output and gassy, so during the night I'll sometimes feel it to see if it needs to be emptied. Your creating a space for the bag with foam is great, very creative. I kind of lean on pillows either for front, side or 3/4. There is something I've seen, but don't recall what it's called. It's a foam filled tube that you position over or under the stoma while sleeping. Walking during the day helps with sleep and sleeping herbs. Gentle music, yoga nidra. I sometimes have the radio really low, a murmur and it luls me back to sleep after empting the bag. Sometimes I use the pillow under the knees. The ileostomy really is a sleep challenge! It is somewhat improved.

Reply by vanessa1970, on Sun Aug 18, 2019 7:46 pm



I love your questions! I have no problems sleeping. I’ve never had insomnia. But, pre ostomy I slept on my stomach. After my surgery I had to switch to either side. A couple years ago I had a revision that didn’t work so they moved my stoma to my left side. I can sleep on either left or right with my knees up. I never sleep 3/4s anymore. I have only very very rarely had leaks in the middle of the night.

Reply by w30bob, on Wed Sep 11, 2019 8:01 am

Just heard on the radio that some major sleep study has been completed and the results indicate that getting less than 7 1/2 hours of sleep results in reduction of ability to complete tasks, etc.  So the way we folks sleep we're lucky to function at all.  Personally, I think sleep is over rated....but I may be a little biased.  Or jealous. 




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