Sleeping Tips for Ileostomy Patients to Prevent Leaks

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 always vertical, 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. 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 whatever makes you sleep best is what you should 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.  

Words of Encouragement from Ostomy Advocates I Hollister

Hello, fellow ileo here for about 8 years using a two-piece system who also wears the bag horizontally. Kinda neat having it at your side rather than hanging down.

It sounds like you have a one-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 vertically you lessen the chance of a leak, especially if you are a roller type, like axle and iggie said. I do the same roll, left to right.

Sometimes on your back is when you get the buildup of poop laying on top of the stoma.

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

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

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

I don't get that at all.

When your bag is at either side and you roll, you will create pressure in the bag. That's a recipe for a blowout, depending on how far you roll, of course.

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

The mio click I have allows you to turn the bag 360 degrees, with no issues of leaks.

It's my experience this comes in handy to wash/rinse the bag at dumping, and enables me to rotate it either horizontally or vertically when I need it.

Your leaks are likely due to sealing issues from your stomach contour. Have you thought about that? Your right side has a better sealing surface than left and down positions.

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

I actually do have a 2-piece appliance, but I can't 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 will be a while until I can use it 🥺🥺

Hello again!

Correct me if I'm wrong, so my understanding is that you wear your 2-piece appliance horizontally, but when you sleep, you wear it vertically?

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

Just to provide more information - my weight is currently 45.5 kg, and I am 163 cm tall. I have lost a lot of weight from cancer and chemotherapy - maybe because I am underweight, 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, there is no leakage because the output flows to the right, and the 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 a cooling gel pad on the right side of my abdomen/midriff. Excuse my English 😅 to keep it from causing sharp pain and also because that part gets so warm from the output in the appliance, the skin becomes very sensitive now 🥺

That is correct how I wear the appliance. Yes.

I sleep normally flat or in the fetal position.

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

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

If you wore a long t-shirt, you 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 the bag into underwear keeps it in line and close to the stomach.

It seems to me you may need to begin sleeping in a different position once you fix that leak issue. Especially if your right side is hurting you now.

It will take time, patience, and a bit of creativity. You will find what works for you.

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; I have to sleep on my back, and I have to sleep with a lot of pillows because, due to having a hiatus hernia, I can't sleep flat anymore.
My hubby often says that when I go to sleep, I 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… 

I was a stomach sleeper before my ostomy, now I am a back sleeper because I have a new cpap machine and it works best if I am on my back. I tip my bag slightly to the right while on my back and I haven't had a leak in over a year. I've had my cpap machine for a little over a week now. No problems with it or with laying on my back. If you are a side sleeper could you try a pregnancy pillow? Someone on here said on another board that it was a good idea and works well. I haven't tried it myself but it seems in theory that it would work.

Hi! I actually do have a pregnancy pillow, lol. I thought it would help me, but Warrior was right; sleeping sideways, either left or right, is safer for me as opposed to sleeping on my back, since the output would tend to just sit on top of the stoma and move rather slowly down as opposed to sideways positions. It has been 2 days since I wore my appliance with the drain facing down, also tipped slightly to the right (I don't know why my husband positioned it like that, but it was already placed and I couldn't be bothered taking it off and repositioning it again), and it is safe to do so, also easier to empty of course 😬😬😬 

Not having a leak for over a year is quite impressive, by the way!

I think not eating late in the evening is a very good idea. If I'm eating a lot of fibre, I'll even have it earlier, say 5pm. And I drink a full bottle of water before bed to thin the output and make it flow better. That, and squirting a generous amount of lubricant/deodorizer in the pouch allows it to flow down instead of pooling at the top.

It really is a different solution for each of us, isn't it? I wish you many restful nights to come.

M

zzz

Hi Marjatta,

I agree; different solutions for everyone but the suggestions have been greatly appreciated. Do you have colostomy or ileos? My output tends to be semi solid like apple sauce so pancaking only happen when I lie flat and not move for hours. Warrior is right; better to move from side to side throughout the night.

It has been 7 days since I repositioned my drainable appliance to vertical, and so far so good but I don't want to be too confident yet; afraid I’d jinx it 😅

I think I know why the leakage happened. Back in those days I did not use a skin barrier wipes. I had noticed that if I only use paste, it will melt quickly to the outer wafer and eventually leaks. The skin barrier wipes really seal everything in and stop the paste from melting quickly. 
Another good news I’d also like to share is that since I use the wipes and wear the appliance vertically, the excoriation has improved so much. I really hope eventually the peristomal skin will heal and close up nicely around my stoma 🤞🏻