Sleeping positions/pillows etc for Ileos

Hello! I was hoping for fellow ileos to share your sleeping positions/pillows or anything you use, including your appliance position as well, to improve sleeping quality and most importantly to prevent leaks?

My ileo is on the right side of my abdomen about 5-7 cm below the belly button horizontally (if that makes sense 😅) and I have been wearing my appliance sideways with the drain facing the right, and this really helps with leakage prevention because I sleep on my side facing the right. I used to wear the appliance with the drain facing down but I kept getting leaks because the output would just sit right on top of the stoma. I couldn’t sleep with my upper body on elevated position, I tried, because I’d get back pain.

But recently the right side of my waist has been getting sharp sudden pain when I move in certain positions. I think it is because of the nerves and muscles on my stomach is rebuilding or something, because I have a surgery wound that lies vertically in the middle of my stomach from a hysterectomy. Also when I lie sideways, the output which is warm, might irritate the skin that touches that part of the appliance.

My peristomal skin is also still healing because I have skin irritation and excoriation and it is taking it very slow to heal due to chemotherapy. 

The pain has become unbearable but at the same time I don’t know what to do;

if I change my appliance position, I’d risk getting leakage

if I keep it sideways, my right side waist is killing me 😭😭😭

Any suggestions will be appreciated 🙏🏻🙏🏻

I think about the best position for anyone with an ostomy is in a La-Z-Boy recliner. I get tired of flipping from my back to each side all the time since I was a stomach sleeper before my ostomy. 

Hello whuf

I am sorry you are having difficulties, I sleep on both sides without any trouble but mostly on the left. My bag is vertical always and I sometimes put a pillow between my legs, it seems to give some stability. I have never used one but perhaps you could try a two piece bag and swing it towards whatever side you choose to lay on.

G-Day Guys,

I have an Ileostomy, as normal on my right and I sleep first on my left and as the night goes on I switch between left and right but never on my back. I have never had a problem with that. We as we know are all different so what ever makes you sleep best is what you do.

Sleep tight IGGIE

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I sleep on a foam right isosceles triangle, with pillow, so that any nightly discharge tends down.  It's similar to being on a recliner, I suppose, so I'm never flat on my back.  Once one's used to it, it's fine.  

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Hello..fellow ileo here for abt 8 years using a two piece system who also wears the bag horizontal.  Kinda neat having at yur side than hanging down.

It sounds like u have a 1 piece. 

That wouldn't work for me.  At night I let it go vertical. 

Sometimes common sense makes no sense to others but I feel with it down vertical  u lessen the chance of a leak..especially if you are a roller type..like axle and iggie  said.  I do same roll.. left to right.

Sometimes on back is when u get the build up of poop laying on top of stoma. 

If yur on either side, the poop won't settle there  at top but fall down into bag..gravity.. 

I understand how u sleep but that to me would cause a leak since you may roll more to right causing pressure in bag to pop it.

Keeping it vertical won't do that so I'm not quite understanding the logic behind u saying it leaks in vertical position .

I don't get that at all.

When yur bag is at either side and u roll,  u will create pressure in the bag. That's a recipe for a blow out.  Depending how far u roll of course.

A pillow between legs helps with back issues. Any chiropractor will tell u that. It's good to use one if u can.

The mio click I have u can turn the bag 360 degrees. With no issues of leaks.

Its my experience  this comes in handy to wash/ rinse bag at dumping..and enables me to rotate it either horizontal or vertical when I need it.

Yur leaks are likely due to sealing issues from yur stomach contour.. have u thought abt that ?  Yur right side has better sealing surface than left and down positions. 

I hope this helps. Just my own 2 cents worth with some experience. Perhaps a better system ( appliance)  is needed and better seal- o ring? 

I actually do have 2 piece appliance but I cant use it right now due to the surgery wound in the middle of my abdomen - the wafer is too big and would not stick to my skin so it would be a while until I can use it 🥺🥺

Hello again! 

CMIIW, so my understanding is that you wear your 2 piece appliance horizontally but when you sleep you wear it vertically? 

Do you sleep in elevated position or just use like a normal pillow?

Just to provide more info - my weight is currently 45.5 kg and I am 163 cm tall. I have lost a lot of weight from cancer and chemo - maybe because I am underweight, that the appliance tends to just lie flat when worn vertically 🤔

When I sleep sideways facing the right, with my appliance placed horizontally and drainage also facing the right, I always reposition the bag so that the bottom where the drain is, rests on the surface of the bed. I get so used to doing this that I can do it half asleep and manage to get 4-5 hours of sleep. Even when my appliance is half full, no leakage because the output flows to the right and stoma is free from “pancaking”. However after 2 months of wearing the appliance and sleeping like this most of the time, it has affected my waist and the nerves surrounding the appliance. 

I actually have to place cooling gel pad on my right side of abdomen/midriff? Excuse my English 😅to keep it from getting sharp pain and also because that part gets so warm from the output in the appliance, the skin gets very sensitive now 🥺

That is correct how I wear the'appliance. Yes.

I sleep normally flat or fetal position.  

I don't believe in elevation .I think it aggravates the seal..makes it weak. 

Sitting and laying down flat on back I feel causes issues with stoma.  That's my feeling on that..

If u wore a long t shirt, u could fold it inside between the bag and stomach.  This supports the bag and prevents irritating skin from the bag rubbing that area.  

Also tucking the end of bag into underwear keeps it in line and close to stomach. 

Seems to me you may need to begin sleeping in different position once you fix that leak issue.  Especially if yur right side is hurting u now..

It will take time and patience and bit creativity..u will find what works for u..

I can't sleep in a fixed position.

That's me though.  Good luck. 

Keep us posted. 

Hi from New Zealand,
When I first became an "ileo" a long time ago I used to sleep on my stomach... Those days are well and truly over now.
A few years ago I was diagnosed with sleep apnea, and I now have to wear a mask so that I don't stop breathing during the night. I wish I could sleep on my side, but if I do I get so much pain; but I have to sleep on my back, and I have to sleep with a lot of pillows as due to having a hiatus hernia I can't sleep flat anymore.
My hubby often says that when I go to sleep I stay rarely move all night.

I used to battle with excoriated peristomal skin, mostly because my old stoma nurse was limited in what she could order, and I used to get a lot of leaks. Since my new ostomy nurse asked me to be one of a handful of people to try the SenSura Mio two piece bags (here in New Zealand the hospital pays for our ostomy and medical products, but they're limited to certain suppliers), at the moment my bags are being imported from the States to New Zealand; but these bags have made so much difference for me.

I changed my appliance last night and asked my husband to position it vertically but slightly tilted to the right. I also had my last meal at 7pm so there was not much output during the night. Went to bed at 2am (I think I was anxious of leakage) and woke up at 5.30am to drain my appliance. 
I had set up a couple of pillows so I’d be in slightly elevated position and somehow managed to fall asleep for a bit despite not being able to roll to either sides, but then rearranged the pillows halfway during the night and tried sleeping sideways and it was a successful “trial”, but I really think having no meals past 7pm really contribute a lot.

 I’d normally have a lot of output during the night and would have to get up around 4.30am or 5am to drain my appliance because it would be half full! Last night it was only 2/3 full although I did have empty it before bed. I guess I was still paranoid about having leakage.

Anyway, it is almost 4pm now and the pain on my right side has subsided so I might be wearing my appliance vertically for now 😬😬😬

Speaking of sleeping apparels; I actually wear maternity underwear because it helps keep the bag in place 😆 and yes I do wear a nightie similar to a long shirt - makes it easy to check the appliance quickly during the night.

Just like you, I actually sleep sideways and tend to alternate rolling either to the left or right. 

Going to have another “trial” tonight, lets see how it goes 🤞🏻

You are a champion for being able to sleep without moving at all!

I have heard good reviews about Sensura products but this is not available where I live. Ostomy products are expensive enough and the ones hugely available here are made in China and Japan. I use appliances from Japan called Alcare. I tried Convated Active but it was too big! 

I use Stomahesive powder and paste from Convatec to help heal the excoriated peristomal skin but it takes so long due to chemo 🥲 

Also it’s kinda sad that there is no such thing as “Ostomy nurse” where I live. The nurses in the hospital here just have general knowledge but not enough to give proper suggestions and we all know every body and stoma is unique 🥲 so since Nov 2024 my husband I have been trial-and-errorring ourselves navigating this ileos and the problems that come with it…