How do you sleep with an ostomy? Need advice!

Hi gang,

I know many of us sleep like shit, what I'm asking is how you physically sleep. My stoma is an oval-shaped bitch, high on the left side, at skin level on the right side. The hole is by the skin level side on the right. So I wear a convex (or concave depending on which side you look) barrier to make sure my barrier ring seals all the time. When I lay down to sleep, I'm either flat on my back (which I hate) or I sleep on my left side (so my stoma hole is at the highest position and drains down to the left where my stoma is raised above the skin and the barrier seals best. But I REALLY want to sleep on my stomach sometimes. I do, but I have to bring my right knee up as far as possible to keep my bag off the ground and possibly getting crushed if I move just a little. This is a real pain in my arse. So I'm curious how you position yourself when you sleep. In a recliner, with a body pillow.........how?

The one thing I did do was go out and buy a 4" memory foam mattress topper. I took the old electric carving knife and made a nice neat cutout in the foam where my bag would hit the bed if I lied on my stomach. I made the hole a little bigger than my bag so I can move a bit.......and this works. But it won't if I move a lot........which I sometimes do. I know they make nighttime bags and even a drain system of some sort, but with my high output stoma, I don't remove my bag except to change it, so swapping bags won't work for me. So I'm just wondering how y'all have sorted out the sleeping position problem. I'm looking forward to your comments and innovative suggestions.........so let 'em fly.

Thanks,

Bob

W30bob,

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 waistline. 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 mattresses and washing protector 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. :-)

Peace

Dadnabbit

Bob,

Great question! I think I am lucky! I hate sleeping on my stomach. I did when I was pregnant some 40+ years ago but not since. I sleep mostly on my sides, either. I do like to lay with the bottom half of my body on the stomach and that leg up like you said but mostly on the side from waist up. Having fibromyalgia limits my sleep and I am allergic to all the meds for it so me and my Acetaminophen PM is all there is! I can go to sleep but cannot stay asleep! Sucks! Cannot sleep in a chair/recliner at all but I do have a medical bed in a guest that is awesome! My mom used it when she came to babysit animals while I was on vacation. I get reacquainted with it periodically. Just had surgery on Tuesday so am using it now. I put the foot up and the head up some and get that zero gravity thing going on! It is the best! No pain

I hate this program. Why does it only allow you to type a certain amount, then if you accidentally tap on something before that allowed amount, it will not let me go back to the end of the comment? I have to delete it from the last allowed line and retype! Dumb! Maybe it is just the mobile app.  

Hi Bob - I've had my ileostomy for 28 years (right side) and have really struggled with sleeping well, but mostly due to multiple knee surgeries and sciatic nerve issues. Like you probably, having an ostomy means you become a light sleeper - rarely do you sleep over 4 hours straight, and when you do, it's like "WOW!". I try to lie on my left side, putting a pillow behind me, but after a while my body wants to roll to the other side. I wake myself up to make sure I'm not pressing on my pouch. In 28 years, I have had only a handful of times where my pouch popped during the night - and those are usually when I ate way too much before going to bed and being so tired you just sleep through the fact your pouch is expanding with air and stuff. Anyways, when I really need some sleep, I sleep on the couch, wedging myself in position, left-side down. Definitely recommend following strict sleep guidelines - don't eat/drink after 8pm, don't go to bed until you are ready to sleep, take an Advil, melatonin, etc. It may help you by keeping your ostomy quiet. I will also eat a spoonful of Peanut Butter as the last thing I eat for the day - kind of slows down the bag. Hope this helps.

I sleep on either side with knees bent a little. On my back, I snore too much. On my stomach, I am afraid of leaks. Usually, I am up two or three times a night to deal with bag or pee and find it very hard to get back to sleep.

I do not sleep on my stomach normally, but to lie on my stomach, I bought a neck pillow shaped like a horseshoe used on the neck when sleeping in the car sitting up. They sell them at truck stops where they have the best selection of memory foam and regular foam padding. The way they are shaped allows support on both sides and allows the pouch to extend through the open end.

Hi Bob. Good question. Left or right side. I keep the bag hanging down toward my feet. Tuck the bag into briefs to hold it. I also wear a t-shirt with a hole at the bag site. The bag comes through the shirt and gets tucked in. This acts as a protector and helps keep me warm. I use a pillow between my legs due to back issues. I never can be comfortable. At least one time during the night to drain. Usually between 3-4 a.m.

Sleeping is definitely an issue here and no circadian rhythm in a long time. I would prefer to sleep on my side, but I find that's not always safe for me in the way of leaks. I used to sleep on my stomach when I had a rough night and couldn't fall asleep. Unfortunately, I stick to sleeping on my back. I bought one of those triangle foam wedges to place under my pillows, and I use a waterproof hospital pad underneath me. The pad was a worthy investment, saving plenty of time, money, and laundry. Since sleeping on my back is not my preferred sleeping position, I opted for some "ambience" to help me fall asleep, so I have a few battery-operated candles for a soft amber glow. I still have a hard time sleeping. On the flip side, it causes me to wake periodically so I can empty the bag.

Hello Bob. Thankyou for such a pertinent question at a time when I'm having similar problems. I'll probably reply to this again when I'm not sleeping well and need something to occupy my time  for an hour or two.

Meanwhile I'm gaining a lot of insight, along with psychological and emotional support from the great answers you have prompted already. Let's hope they keep flowing -- if only to identify how widespread this particular problem is. 

Best wishes 

Bill 

Novel idea, Longroad!

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 bile......so 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 an 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 can no longer afford. 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,

Bob

I think if you ask this question of anyone with an ileostomy, the answer will be "4 hours or less"! The longest stretch I ever achieved was about 7 hours, and that was only because I was jet-lagged and hadn't had any shut-eye for about 3 days.

I sleep on both sides, no worries. My stoma is quite flush to the skin (right side, just across and down from navel), and I also use a convex base which, for me, prevents any leaks. The only time I sprung a leak at night was in the early days when I wasn't using a convex appliance. I don't sleep on my back because I have the sneaking suspicion I snore! I don't sleep on my belly because I end up with a crick in my neck.

After 10 years, I think I'm used to the 4-hour stretches. I'm pretty much out like a light for those 4 hours, so I figure that's better than no sleep at all. When I do get up to empty, I reckon I could do it blindfolded. It might be muscle memory, but sometimes it feels like I'm sleepwalking through it. When I get back to bed, I usually go straight back to sleep. If not, I read a book until I drop off again.

"Ahhhh....the old horseshoe pillow around the ostomy bag trick" - you can just hear Max saying it, hey! Excellent idea :-)

Hello Bob. I too tend to find myself things to do when I cannot sleep, which makes the whole sorry experience seem a bit more productive than moping about feeling sorry for myself. 

My present bout of insomnia is being caused by excruciating pain which seems to be exaggerated at night-time and by laying in the same position for more than half an hour.  I will deal with this aspect first  as it is more in alignment with what I need to do to accommodate my stoma. Firstly, I have a bed that adjusts at both ends so that I can vary my positioning throughout the night. This is a very useful arrangement for me and saves me having to get out of bed each time I feel so uncomfortable I have to move my body position. Unfortunately, the mechanics of the bed's movements are not exactly silent. (which doesn't go down too well with the wife) so I sometimes simply get out of bed and come downstairs to sleep in the laid-back chair. I used to sleep in this for months when I dislodged a few ribs skiing and could not sleep laying flat.  Fortunately, I often find the most comfortable position for me to sleep is on my back, so sleeping in a chair is not a hardship and it suits the stoma situation because I hardly move whilst sleeping (That's part of the problem because I tend to sieze-up and the pain becomes unbearable).

Secondly, I have another problem - with sleep apnoea. Tests indicated that this caused me to wake up (without even realising) about 30 times an hour. I was prescribed a Continuous Positive Air Pressure (CPAP) machine which resolved the problem and allowed me to get a good night's sleep whilst attached to the machine. The sounder I slept, the more problems I had with the pain brought on by being in one position for too long. None of these things are directly related to the stoma, which, by comparison is not a problem at nights. I simply leave my irrgation sleeve on, folded like a very large bag and that takes care of any residual output overnight. 

As for the creation of rhyming verse: It doesn't quite work in the way that you portray. Although a word can sometimes trigger a concept, which leads to a verse. With regard to lack of sleep and tiredness as it relates to chronic illness. I have written several verses in the past on this subject and they have all been posted on my blogs, so they are already available to read on this site. Titles include: 'I Get Tired'; 'Tiredness and illness'; 'Tiredness 2 & 3' and 'Mishaps at night'. 

The fact that I have put pen to paper previously on this subject does not mean that I will not do so again. One of the greatest motivators for writing rhyming verse tends to be when things irritate me in some way. The lack of sleep is undoubtedly irritating and frustrating so I expect to find myself addressing this issue again in the near future. One of the drawbacks is that lack of sleep can lead to a befuddled brain - which is not really conducive to conceptualising, conceiving and constructing rhymes. 

It's now time to go back to bed to try to get a bit more sleep before getting up for work! 

Best wishes

Bill

Hi Bob, up until last April when I had resection surgery and stoma moved from right to left side, you described my stoma to a T. It was high on the left side and the opening was on the right side at skin level. But it didn't start out that way 33 years ago. It stuck out about an inch and the opening was in the middle. However, due to Crohn's and scar tissue, it ended up like you described it. Before surgery, I would start the night out on my right side but roll over to my left. But if I happened to lay on my back, I snore and wake up coughing. Now, with my new stoma being on the left, I sleep on my right side, which I prefer, and get good sleep.

Omigosh, dadnabbit... I have to say that I haven't met anyone yet on this site that has an ileostomy due to other circumstances.... Me too... That is why I have had a temporary ileostomy since January of 2018.... My case is absolutely not typical either... I understand completely about the 2 hours thing, and wow do I ever relate....

Hi Bob.... Yep... I have to eat constantly or I get very sick and dehydrated 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 morning.. As the day progresses, I am better ... I have to sleep on my side because otherwise I will have problems...

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, or 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 anymore, and even water bed accessories are hard to find anymore to keep ours going. But I had a queen-size water bed since the mid-late 80s, 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 anymore, 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 excessive back 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.

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

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

I have only had my ileostomy for 3 months.

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 receive, good luck.

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 strapping 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 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 nighttime ostomy bag and can sleep through the night... Is no one using the big bag? I remember 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 nighttime 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.

Thanks,

Bob

Hi, this was a huge problem at first. I also find convex works much better to hold everything in place. I even use a ring with convex. One of my doctors suggested an extra large bag for the nighttime. I use a regular bag for the day and the high output pouch for night. Sometimes I can go 6-7 hours. During the night, I'll sometimes feel it to see if it needs to be emptied. Creating a space for the bag with foam is great, very creative. I kind of lean on pillows - front, side or 3/4. There is 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, white noise. The ileostomy really is a sleep challenge!

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 a 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 overrated....but I may be a little biased. Or jealous.

:O)

Later,

Bob

Morning Bob....Like Puppyluv, I don't and never have belly slept.....just recently, I am now able to sleep on either of my sides....if right hand sleep, it's comfy, no blowouts, no leaks, etc. On my left, everything shifts from that side down, but again, no leaks, no blowouts, and I wear the same bag as I do during the days. I'm too cheap to switch out, lol.....mind you, I do get up at least once during the night as I roll or move. I do the hand test to feel production, get up, poop (empty), and I take sleeping pills to sleep.

My homie is on my right side, right across from my belly button, but he's not overly large nor big....

Wish I had a miracle solution for you, but if anyone can figure it out, you will.

Stay healthy.

Tracy