Side Sleeping with an Ileostomy - Seeking Leak Solutions

Hello all! I'm new to the community. This looks like a great place for advice and the people seem great!

I had my ileostomy 5 weeks ago so I'm still very new to this all. I've always been a side sleeper, but 95% of the time I'm sleeping on my side, I wake up to a mess. I don't sleep well on my back, but I have an adjustable base bed so I can incline it like a hospital bed which does allow me a little sleep, but I sleep far better on my sides.

The equipment I've been using has varied, and I haven't had much success with anything during the night yet. During the day it's fine though. I got some samples from Coloplast and Hollister. I have a crease in my abdomen around my stoma since my surgery so I require convex rings and skin barriers/appliances per my ostomy nurses. I've tried the 2-piece Hollister convex barriers, the 2-piece Coloplast convex barriers, and convex rings from both companies, as well as 1-piece appliances from both companies. I always wear a belt 24/7 to help keep things secure. My output doesn't seem to slow down at night and I get up every 2 to 3 hours to empty, mostly very soft/liquid, usually 0.2L - 0.3L as measured by the Coloplast high output bags.

I'm looking for advice here. Is this just an equipment issue? My output seems to be very acidic so I'm wondering if sleeping on my side causes the stool to lay on the ring/barrier and eat away at it until it leaks. No leaks when sleeping on my back while my bed is adjusted up.

 

Any assistance would be greatly appreciated!
Thank you!

Josh

Hi J,

Well, we've got a lot of moving parts here, and we'll probably need some more info about your specifics. Let's start with your mess. Why is there a mess? Is it because your bag overfills or because you have output seeping under your barrier and ring? Sleeping for ostomates is a challenge, and the more liquid your output, the more of a challenge it is. However you sleep, you have to make sure you don't allow output to pool around your stoma, as it will dissolve the barrier/ring material and allow it to seep out and leak. You also have to make sure that the position you sleep in doesn't distort the skin around your stoma or the ring/barrier could lift off your skin, and you guessed it, you get a leak.

If you have a crease in the skin around your stoma, does the crease get deeper when you're in a sleeping position? If so, the barrier/ring can't change shape very much to match your new skin shape. Usually, for creases, your ostomy nurse would recommend a paste to level it somewhat to give the ring/barrier a fighting chance. When you lay on your side, gravity does weird things to your skin. So if your crease becomes more severe, that could be causing your leak. Also, when you lie down, your belt will loosen significantly, so readjust your belt once you get comfortable lying down.

Everyone has their own sleeping position preference, but if you have mostly liquid output, you have limited options. I find the best position to prevent leaks for my high liquid output is to lay on my stomach, but bring my right knee up as far as I can to make a pocket between my bag and the mattress. I like to use gravity to help my output stay away from my stoma as much as possible when I sleep. You could also use a pillow under your right knee for added clearance if need be.

Let us know what causes your mess and then we can explore the proper path to getting you straight!

;O)

Thank you for the reply!

The mess isn't due to the bag overfilling; there is still room in the bag when I wake up. I have output seeping under the barrier and ring. This output is usually liquid, even if the contents of the bag are more of an applesauce consistency. I get a mix in there sometimes.

I'm not sure what my skin is doing while lying on my side, as I've always had an appliance attached while lying down. I would make the assumption that it distorts and goes even more convex as it does if I'm in a normal seated position.

None of the ostomy nurses I've spoken with have recommended using paste for anything. They're actually pretty adamant about not using it as it sticks to your skin and can cause irritation without adding much benefit. In my Hollister sample kit, they included some weird strips that look like they're made of the same soft, flexible material as the rings. I suppose I could try to break off a piece of that and try to put it on the sides of the convex ring for some added surface area to potentially fill the void.

Good point about the belt. I do notice it loosens a lot while on my side. Whenever I get up the confidence to try side sleeping, I'll cinch it down tighter.

I did use to sleep on my stomach as you describe prior to my ostomy but have been afraid to for fear that something would happen to the bag.

I wonder if I was able to adjust the head of my bed up some and lie on my side, it would allow the output to stay away from the stoma. This may break my back though, but it seems like we agree that output pooling on the stoma is the culprit.

Thank you,
Josh

Hello,

5 weeks. Your ostomy is still healing, and your body is adjusting to the ileostomy. The hardest thing is finding equipment that works for you. To thicken output, try Cholestyramine, brand name: Questran. Normally used to lower cholesterol, it prevents the gall bladder from recycling bile. It's a powder you add to water.

Also, eating a marshmallow or two will slow output.

Your body continually produces bile. So even if you ate nothing, you'll still have output.

How far above your skin does your stoma protrude? It should be at least an inch. If your stoma is too close to skin level, you'll always have trouble. If yours is too low... Consult your surgeon about revision surgery. It's easy for the surgeon to pull it out a little.

Some ostemates have made little directional spouts that fit over the stoma to direct output away from the skin and into the bag.

Good luck.

I'd be using that adjustable bed and figuring out back sleeping. I'm guessing that being on your side changes your seal somehow and generates the leaks.

Words of Encouragement from Ostomy Advocates I Hollister

+1 on Beachboy - your ileostomy is brand new. It still needs to settle in a bit.

+1 on w30bob - I sometimes sleep with a pillow under my knee so I am not quite sleeping on my back and not quite sleeping on my side. The best (worst?), of both back and side sleeping. This works well for me.

You did not mention which side causes problems. Both? When I had an ileostomy (about 1 year before colostomy), when I slept on my stoma side I had a few problems but not on my non-stoma side.

Hope this next part will make sense. When I changed my ileostomy bag, I would stand up very tall and lean back a bit, chest out. This would help tighten the skin on my stomach a little and allow the wafer to stick a little better. When I leaned over or was on my side, the wafer was better able to stick to my creases.

Hi Josh, welcome to the site. I find sleeping on the opposite side of my stoma works for me until my shoulder starts to ache, then I roll on my back and that usually makes me change my wafer/pouch sooner.

Thanks for the replies, everyone! Tonight, I may try sleeping on my non-stoma side with my belt cinched down tightly. I believe I've had leaks from both sides, but it seems to happen more on my stoma side. I appreciate everyone's advice!

Hey there,

I used to be a side sleeper until I got used to sleeping on my back. I sleep raised up and use one of those travel pillows to help the sides of my neck. May I ask why you are using both a convex barrier ring and a wafer? Those do have a cup-like feature, especially Coloplast, and output has a tendency to sit in there, which could be why you are leaking. Does your stoma sit flush when you lay down? And be careful sleeping on the opposite side of the stoma bag; as it fills, it gets heavy, and you need something to have your bag lay on so it doesn't pull.

Hey PistolPeets, are you absolutely sure that the skin around your stoma is completely dry before you put your barrier ring and bag on? This is so important. Nothing will stick well to damp skin. I blot constantly and use a hair dryer before slapping everything on. Then I hold my hand firmly against my stoma for at least five minutes. The warmth of your hand will help cement that seal. You're still so new to this and you'll get better with time.

Give it time and you will probably get to return to your old sleep position. Talk to the health care suppliers you are dealing with; perhaps you need a different pouch. I tried several before I found the perfect one. I am 11 months post-operative and pretty much doing really well with my ileostomy. Physically, it is okay; the depression and self-awareness are issues I am dealing with.

Hi Josh,

I had an ileostomy in May and have a lot of output. Also, I experience leaks when lying on my left side. I was using a Coloplast stick-on two-piece with a ring. It leaked under the ring.

The previous replies from everyone here I agree with and like.

I just want to add that I switched to paste instead of the ring and am using a click-on Coloplast. The wafer on the click-on is larger than stick-on wafers; for me, I think it holds better. The paste comes off easier for me than the rings.

Because of the neuropathy in my feet, my balance isn't great, so I sit to apply everything in a leaned-back position. I can see better this way and manage easier.

You may want to attempt checking out how your skin and stoma move while you have everything off during a change. I keep my stoma covered with a paper towel when it's out in the open.

You'll find the right combination that works for you.

Desiree

Neuropathy in your feet sucks. I've had it since I stopped chemotherapy over three years ago. Close your eyes in the shower and don't touch the walls; that's a fun feeling. 😂

Hi,

I haven't tried that as my balance isn't good, but anytime I'm barefoot, it feels very strange. I bought a pair of comfortable slip-on shoes just for inside the house. I kept losing a slipper and didn't feel it fall off until I stepped.

I'm lucky my fingers at the tips aren't as bad. It makes life interesting for me, though, especially opening up something new; especially a box. 😀

Desiree

 

No issues in my hands, my feet just tingle 24/7.

Thanks, everyone. Last night I tried side sleeping on both sides with no major leaks. After I showered in the morning, I did notice a minor leak on the left side where it usually leaks beyond the seal of my ring. My bag was on day 3, so I changed it. I think cinching my belt up tighter helped maintain the seal. I'll try it again tonight and report back!

One thing that I don't think has been said is that when I first had my ostomy, I put a pad on my bed so that if I had a leak, the cleanup wasn't a total disaster. You could just put the pad in the wash, put on a new bag, and move on with your day. One thing I also thought of is that your stoma is still changing sizes. So that may make it harder to cut the wafer to the right size, which could also cause leaks. One thing I do is I put the ring on the wafer and then apply the wafer to my skin and hold it down for 30 seconds on the top, bottom, and sides. This creates a better seal. The warmth of your hand when you press down on the wafer will help the seal. I sleep on a compromise between my back and my side. I use a pillow to prop myself up. I haven't had a leak in about a year now. It will be a year in October. But leaks are common at first when you get your ostomy. So don't get discouraged; it will get better.

I had to switch over to sleeping in a recliner for the last two years. That helped the leak problem, but I'm really starting to miss lying flat. Going to find a bed soon and experiment with that.

RE neuropathy - head to toe, 24/7. We keep trying different meds but it's tough to get past.

infinitycastle, I have some of those chux that they use in the hospital to keep the mess off the bed, and they work great!

 

I was at a family gathering tonight and felt a leak. I went into the bathroom, and that left side had leaked again where it always does and caused a mess. Luckily, I only live about 300 yards away, so I went home and changed my clothes and bag.

It seems as though there is a lot of skin irritation in that left-hand spot, so much that the skin is almost slippery despite anything I use to clean it. I reached out to my ostomy nurse for suggestions. I guess I'll have to return to sleeping on my back tonight, unfortunately... I'll update tomorrow hopefully!

 

Thanks, all!

Lots of really good advice already given, but two things you might look into: 1) Wafers with deep convexity - when I got my first ostomy, I had a frequent leak at about the 5 o'clock position due to the stoma being flush with the skin there and because of the odd shape, the deeper convex wafers helped reduce leaking more than a regular convex wafer. 2) Eakin seals have been a godsend for me, but the key is to mess with them a bit. I tear mine and then roll it like a snake to build up the wafer to fill in any dips or gaps. I have a dip near my stoma due to scarring, and the Eakin allows me to build up that area more to get a good seal - I find it works better than paste and tends to give me more wear time.

PS: It can be frustrating to find what works, but often once you do, you can get longer wear times and sleeping gets a bit easier.

So you are having leaks on the left side during the day as well as at night? For sore skin, you can get a product called Marathon that helps a lot. I think it is medicated and it has a crusting effect to protect injured skin. My ostomy nurse got me some, and I save it for when I have bad skin, which isn't too often now that I have figured out how to get a better seal. I use sting-free barrier wands on my skin too, and that protects the skin really well. They are DermaRite #11239 StingFree Alcohol Free Liquid Skin Prep & Shield. I use it not only on the skin around my stoma but also on the skin where the wafer goes. It protects against adhesives as well as bodily fluids and also friction. It's a good product for protecting skin.