Sleeping with an Ostomy! | Let's Talk IBD
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- เผยแพร่เมื่อ 14 ก.ค. 2024
- Sleeping is STRESSFUL when you have an ostomy because you never know what you'll wake up to!
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I used a stoma wrap or ostomy underwear (which has a pouch inside) at night. Ostomy underwear are very expensive, I think like $25 a pair, so I only had 4 pairs. I would use them for long distances travel as well. I loved my disposable bags for travel. I would use the gel packets in them snap it off, put it in a plastic bag and dispose of it. Then snap on a new bag. Done in less than 5 minutes. I no longer have an ileostomy as I’ve had reconnection to my j pouch. It took time to get used to my ileostomy but once I got it down it didn’t bother me one bit. Thank you for your videos. I’ve been so private about my disease and struggled alone. I feel like you take the stigma of being gross and misunderstood off the disease and everything that comes with it. Even leaving this comment is huge for me. Thank you!
I had a ilsecomy reversal on 28 April 20. I had glad I found this young lady to. I felt like you alone and struggled with ilsecomy bag as well. I thank you for comments and experiences. God bless you and lady who product these videos. 👍
3 1/2 weeks into this. Went in with the worst abdomen pain and ended up emergency surgery with a colostomy. I am 70 n overweight so I don’t have a regular stoma. Mine is an innie. My major problem is none of the bags stay on an it leaks under all the wafers and they fall off. This has been a nightmare . I love your videos and feel so sad you have to go thru this so young. Your attitude is amazing.
Love how you talk about things in a positive way. Some of this stuff can be down right scary-harry but when you talk about it, seems less scary. I'm sure the kids that you help on a daily day this helps them enormously. Especially the parents. *Thank you* for being such a positive person on making things less scary-harry. ❤ keep up the wonderful work you do❤
Thank you for all the videos you've posted. I feel encouraged! God bless you.
These are awesome tips. I wish I would have come across these tips when I first got my ostymy.
When you said it's been 8 years you've had your ostomy, it made me wonder if there are any changes children with ostomies should be prepared for as they grow
Excellent information.
Yes. My mind has made adjustments subconsciously that help my sleep.
The analogy about the alarm clock is right on. I'm 5 months out of surgery and have been in the habit of setting a clock for every 2.5 hrs early in the night, then 3 or 3.5 in the early AM when the output tapers off. This has worked out very well for me. I do find that my body has adjusted to that rhythm, and I often wake up 5 or 10 minutes before the alarm is set to go off.
Great video and information. I have a urostomy and I use a night collection bag connected to my bag with a vinyl hose. It allows me to sleep all night without having to get up and empty my bag. It requires me to sleep on my back. On occasion I rolled over in my sleep and the hose pulled off from the bag causing a major bed accident. I always have a large hospital pad on my bed to protect my sheets and mattress.
Girl you are so funny! I also sleep on my back and you talking about the bag getting heavy and pulling to the right, that is so me, lol.
Coloplast have just come out with high output bags, and they are amazing for people with high output especially for night time!!
The sweatshirt idea is GENIUS! I hate washing my sheets at 2 in the morning. Way rather just pop the sweatshirt off, wash my hip and change the bag as opposed to striping the bed in the middle of the night!
Yes I’ve had my bag for 26 years. Never have any leaks now, your body does wake up in time….
Awh Maggie you look amazing. I am so glad that you are doing so well. 👏👏👏👏👏👏👏👏👏👏👏
I used waterproof bed pads. I found them a great help.
I really admire you ❤️❤️❤️❤️ your so strong.
You are awesome! Thank you soooo much!
No judgments on the big hoodie thing. One time I leaked during the middle of the day while I was on a field trip in the middle of a school day and I had one of my dad's hoodies on and I didn't even know I had a huge blowout until I got back to the school. As soon as I figured out I had a blowout I got in my car and went straight home
Hello and thank you for your brilliant video since ostomy surgery 15months ago it's a disaster I have spinal rods in my back and I cannot sleep on my back at all and I constantly leak I have tried everything Eakin seals the works but I have great belief in the convatec paste since I started using it I don't leak as often as I have. God bless and your brilliant with your videos.
Wear a bandeau top around your stomach, perfectly holds it in place of you have the right one. No more issues
Puppy pads help to keep the bed too
I sleep on disposable underpads in case I get a small leak so I don't ruin my bedding. I have a hard time sleeping on my back.
My wife sleeps on her back always. Snores like I don't know what. I wear earplugs.
You can find some that are washable AMAZON as well. That way you don't have to worry about replacing/repurchasing them.
I did same thing when I had a ilsecomy bag to
Lucky I haven't had a leak but even in the first few weeks after having the ostomy, my body adjusted to having it
Have you ever tried an ostomoty support belt. Coloplast has an ostomoty pouch that connects to a tube
Several months ago, I had a ridiculous number of overnight leaks in a row. The only thing that helped in the short run was using a Foley catheter, as you described. It was awkward, and one has to watch the output thickness carefully, but it will work. I had to make some diet changes and backed off of the fiber powder significantly, both of which helped... fingers crossed!
I had problem sleeping through the night with my ilsecomy bag. I would wake up at 0300 am regularly to empty my bag. I learn to.sleep on my back. I dealt with leaking but. I had to be patient with that. Eventually I got a handle in the leaks. Thank you for your insight about the touchy subject. Thanks.
Just woke up with my first leak ...fun . . ..
I don’t have an ostomy bag but I’m really curious about it
My service dog alerts me to issues with my bag. If there’s a channel even, before output follows that channel, he wakens or alerts me. If we are in my wheelchair, he likes to ride on the left side of my chair. He’ll alert me when we are out. I keep a hospital mattress protector under my sheet to protect my mattress if I have a leak in bed. In the backpack on my chair, I carry a complete set of clothes and all I need for a total bag change. Everything fits into a large ziplock bed. I also have wet wipes in that ziplock, to use for washing the end of my bag after emptying, or to wash me if I need to do a complete bag change in a public washroom. I have a few extra large ziplock bags in case I puke (unfortunately another common problem I have) or to put a used ostomy bag into before throwing it out.
Yesterday was the first time I had to empty my bag on a “hiking” trail in the Bush. I drained it, then used my wet wipes to clean the end of the bag. The used wet wipes went into a ziplock bag and I was ready to join the others I was with quite quickly. Anytime I’ve decided a ziplock had been used enough in the kitchen, if it has no holes, it becomes a part of my stoma kit-reduce and reuse
Coloplast makes a elio night drainage bag that hold up too 2 liters. Look it up. It looks a little like over kill. I got a free sample.
Even if you have an ostomy belt on, leaks still happen, day and night.
I hate ostomy belts personally. I just think that they feel so uncomfortable.
Having my colon removed Nov. 1, 2019. I've been wondering about this. Thanks. Also, you're super cute.
Looking forward to the surgery im supposed to only have the ostomy till the 2nd surgery chemo could happen though
How about using surgical tape to secure the ostomy bag to the abdomen to prevent bag from popping open?
Grace Tang it works but it leaves gunk on your skin. Some companies create flange extension strips that work better
I've had my ileostomy for just over a year now, it's temporary because I supposedly only needed it for what I had/have but, while I have it my body has kind of sort of adjusted to having it, however my problem is, my "air", or in other terms how much gas I'm passing, at night. I realize the foods and pop I drink are what are contributing to that butttt here's me not drinking pop -_-, (I don't drink coffee so, that's how I get my caffeine fix). My bag fills up with air, and doesn't filter it out. I wake up every so often to air it out, and will on occasion just go and empty in to the toilet but do you have any suggestion for how to deal with air, since the filtering system doesn't work on them?
I sometimes have the same thing but not so much lately i dont know why,, i definetly noticed if you havent eaten for awhile more gas will be produced,, maybe you are eating too early?
Can't sleep on belly and left side anymore and thats an issue. No leak issues.
Try 2" wide Tegaderm taper over the wafer. A great safety barrier
I've never had a giant explosion or anything, but I set an alarm for 2AM - so as long as I empty around 10PM, I get up just that once in the night and everything is fine. I've noticed the couple leaks that I've had (of which none have been in my sleep thankfully) are usually my fault too, because I'd left the bag on a day too long out of laziness. Live and learn!
I have a question for anyone with any info. My sister recently had a colostomy , her stools seem to push the appliance away from her. She has tried stool softener not helping. she has had her stoma about three months. Any suggestion would be kind. Thanks in advance......Hugs and Prayers. Nice video I have learned a lot from you.
Hi , I care for a loved one I all phases of her having a bag and no leaks at this point . I check it often , clean real good, dry , apply the sticky adhesive and make sure the hole is just right and with a gasket. I make sure her diet is mixed with food and drinks that are mixed with natural stool softeners, prune juice and soft foods and always probiotics. She has only had the bag a short time but I keep with it and it seems to be going fine , she’s even slept through the night and only waking up a couple of times . I also keep her spirits up and pray a lot and always before she gos to sleep. I will say that her body is adjusting pretty well . My thoughts and prayers are with your sister .
Have had quite a few leaks over the years but lately my body seems to know when my bag is blowing up and I can run to the toilet. It's permanent for me so guess I had better get used to it.
What about making a product like a tube top but that would go over your stomach and over the bag.....that way it wouldn't cover your whole body......? Just a thought.
Yep! Those exist and work great :)
I have a urinary ostomy . I can be sound asleep and as you said one drop of urine down my side and im wide awake .
For some reason while I was sleeping two nights ago I took my bag off
Yep took it off
I must have been in a subdream state because I woke up.and thought did I just do that for real and yep I did
No mess thankfully
The link to the sensor doesn’t work! Having trouble finding it online.
The company no longer sells it as this video was made a few years ago, I am sorry!
You might be able to answer this being your a nurse. I use the little packets to help absorb and thicken my output..one of my concerns has been, if the little beads get on my stoma, is it unsafe? My concern also has been, will the beads get into my stoma as well? Anyway, as always..thanks for the awesome and informative vids'. I appreciate you!
I dont use them beads that you do but i would have thought they must be entirely safe or they wouldnt be available for use inside the bag, i dunno anything about it but just my thoughts as they are made for these purposes and have to be tested first right? i thought all these products are tested for safety so your probably safe using them but check with your nurse or doctor if your worried i guess
Get some sandwich size Zip-lock bags and you can empty your pouch while lying in bed with a little practice ! Works for me ! 13 years experience ! Now go to bed !
id be nervous but i have thought to myself when im feeling lazy i wish i had a way to empty without getting up haha
I've thought about using a gallon-size zip-lock bag jerry-rigged to use as my night-time pouch because that for sure would hold my output and let me sleep straight through the night uninterrupted!!! Of course, my husband thinks I'm nuts, but he doesn't have the colostomy --- I do --- and sometimes it's a real pain for me. I carry a HUGE red leather Frye tote bag to hold my ostomy supplies plus my incontinence pads PLUS all the stuff women normally carry in their purses!!!!! Yeah, life sure is interesting!!! Best wishes! (Great idea to use the sandwich bags to change/empty your pouch!)
I’ve had my Ostomy since 2015 it’s honestly the worse thing ugh lol sleeping and waking up covered in stool is the worse . Honestly I just seen your vids . And have to say your a very string person . Very hard and embarrassing subject .
Couldn't you just put another back around your bag, to take care of that problem?
I use irrigation sleeves at night, they are just long bags, it helps me sleep through the night.
Also, sometimes I’ll have a dream that my bag leaks, then I wake up to find my bag is actually leaking!
ShyAnn291, I to the same thing. I use Hollister colostomy supplies, so my irrigation sleeves are not zipper bags. I use waterproof tape and then more tape across the folded down part of the bag, and then I snap the sleeve onto the barrier, and use MORE tape to tape it to my abdomen as more protection for it during the night. I sleep on the reclining sofa in the living room on my back and haven't had a leak yet! It does work and it lets me sleep through the night
without having to wake up to check a pouch. On the extremely rare occasion when I sleep in bed, I sleep on my right side so I don't squish my stoma and have even MORE problems! Sure am glad I'm not the only oddball out here! Best wishes!!!!
I only ever had one leak since iv been home an it was a tiny one, just a bit of wetness came out an it didnt keep coming lol i mean that i had leaked but it stopped leaking an i couldnt figure out where it had leaked from,, it is strange sometimes,, sometimes you just dont know why its leaked but luckily no leaks have happened since december for me an i dont know why haha i used to sleep on my tummy/side but idont sleep on my tummy anymore i worry too much about it bursting the bag from the pressure,, but i can sleep on my side so its ok an i dont mind , i dont know if its true about your body getting used to things as in the day an anytime i never know when my bag is full unless i touch it to check on it, its like the bag is not there i have no sense of awareness about it which is ok i guess i like that i can just forget about its existence lol
If it were me, I'd use a puppy pad
It pretty much sucks not being able to sleep on your stomach anymore. Living with a Ostomy is very difficult.
How do you handle sex
You or so young