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

Posted by w30bob, on Thu Aug 08, 2019 10:35 am

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 ***, 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 from 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 night time 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 ya'll have sorted out the sleeping position problem.  I'm looking forward to your comments and innovative suggestions.........so let'em fly.

thanks,

bob

Reply by dadnabbit, on Thu Aug 08, 2019 11:23 am

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 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 

Peace

Dadnabbit

Reply by Puppyluv56, on Thu Aug 08, 2019 12:52 pm

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

Reply by Puppyluv56, on Thu Aug 08, 2019 12:54 pm

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. 

Puppyluv56 wrote:

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



Reply by LetsGoGolfing, on Thu Aug 08, 2019 1:02 pm

Hi Bob - I've had my ileostomy for 28 years (right side) and have reallly 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, its 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 guidlines - don't eat/drink after 8pm, don't to to bed until you are ready to sleep, take an advil, melotonin, 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. 

Reply by xnine, on Thu Aug 08, 2019 1:09 pm

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 up two or three times a night to deal with bag or pee and find it very hard to get back to sleep.

Reply by Longroad78, on Thu Aug 08, 2019 1:36 pm

I do not sleep on my stomach normally but to lay on my stomach I bought a neck pillow shaped like a horse shoe 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. How they are shaped they allow support on both side and allow the pouch to extend through the open end. 

Reply by warrior, on Thu Aug 08, 2019 2:14 pm

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

Reply by newyorktorque, on Thu Aug 08, 2019 3:21 pm

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 thats not always safe for me in way of leaks.  I used to sleep on my stomach when I had a rough night and couldnt 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 + 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.

Reply by Bill, on Thu Aug 08, 2019 3:44 pm

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 

Reply by newyorktorque, on Thu Aug 08, 2019 3:58 pm
Longroad78 wrote:

I do not sleep on my stomach normally but to lay on my stomach I bought a neck pillow shaped like a horse shoe 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. How they are shaped they allow support on both side and allow the pouch to extend through the open end. 

Novel idea Longroad!

Reply by w30bob, on Thu Aug 08, 2019 6:12 pm

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 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,

bob

JMC
Reply by JMC, on Thu Aug 08, 2019 9:10 pm

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.  Don't sleep on my back because I have the sneaking suspicion I snore!  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, 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, reckon I could do it blind-folded, might be muscle memory but sometimes feels like I'm sleep walking through it, when I get back to bed 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 Smile

Reply by Bill, on Thu Aug 08, 2019 9:17 pm

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

Reply by ron in mich, on Fri Aug 09, 2019 9:03 am

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 high on the left side and the opening on the right side at skin level but it didnt start out that way 33yrs. ago, it stuck out about an inch and the opening was in the middle but due to crohns 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. my new stoma being on the left now i sleep on my right side which i prefer and get good sleep.

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