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ileo_chopper
(@ileo_chopper)
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November 2, 2018 10:07 am  

hello all,

  how is everyone sleeping? please tell me! ive had problems with leakage just like everyone else and that is slowly getting better with the routine i am in.  when it comes time to sleep... when i lay down the fluid in my pouch pools over my stoma at the top of bag. i was a stomach sleeper before herbie came along.  ive tried sleeping sitting up and i do get a bit of rest that way but not enough. im actually considering shimming my bed a few degrees so its on a bit of an incline to keep the fluid in the bottom of the bag?? anyone else try this? any suggestion, tip, or method would be greatly appreciated.


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VeganOstomy
(@veganostomy)
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November 2, 2018 10:30 am  
Posted by: ileo_chopper

how is everyone sleeping? please tell me!

I sleep on my back, side, or side but angled slightly so I'm facing down a bit. Either side works for me, but I prefer my left side. 

.. when i lay down the fluid in my pouch pools over my stoma at the top of bag.

A gelling product will help to thicken your output and make it less likely that you'll have leaks. 

im actually considering shimming my bed a few degrees so its on a bit of an incline to keep the fluid in the bottom of the bag?? anyone else try this? 

I would definitely sleep "half sitting" on a stack of pillows when I was a new ostomate and it helped a lot. No harm in doing that - whatever gets you to sleep better 😊

 

Just your friendly neighborhood ostomate.

~ Crohn's Disease ¦ Ileostomy ~


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Chris
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November 2, 2018 6:16 pm  

I just dont sleep :)

I haven't had a decent night sleep since I got this dang thing. 

Hopefully others have, and you will - but one of the things I dislike most about this thing (and there are quite a few), is that I dont sleep well anymore.

That being said, sleeping on my left side and letting the poop fall down from my stoma (on my right) into a hanging bag, reduces the "poop sitting on the stoma" concerns I used to have at the beginning. I still get up at least two times to empty mind you.

 

 

 


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Blaze
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November 3, 2018 6:20 am  

Is sleeping really that big of a problem with an ileostomy? You guys are scaring me, I will have my surgery next week and this makes me a lot more worried :(


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john68
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November 3, 2018 6:49 am  

Hi Folks, Is sleeping with an ostomy a problem, No its not, empty the bag before going to bed, you may have to empty during the night but how many folk have to get up during the night any way!! I sleep on my right side and wake up on my back. yes if very tired and on the odd occasion I have had the bag balloon and leak but that's my own fault!! Like all things ostomy don't over think or over do. Its pretty normal :-D 

ileostomy 31st August 1994 for Crohns


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Bubbles
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November 3, 2018 8:55 am  

sleep is not an issue for everyone. I have no problems. I sleep only on my back . 

Stop eating 3 hours before you go to bed . Empty before bed . Wake up once during the night to empty again . That's my schedule. I sleep like a baby .

My secrect weapon is Brava Protective Seals . No leaks ever.


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ileo_chopper
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November 3, 2018 9:03 am  

i have tried a gelling product but i need to try more.  the gelling product i have is a tablet and its only good for a 150ml of fluid so i have to put 4 in my pouch. ive seen some of the videos of the gelling product and will request some samples.  


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VeganOstomy
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November 3, 2018 11:29 am  
Posted by: Blaze

Is sleeping really that big of a problem with an ileostomy? 

It shouldn't be, but sleep can be challenging for some. Many options for solutions depending on what the problem is.

@chris, what kind of trouble are you having at night? 

Just your friendly neighborhood ostomate.

~ Crohn's Disease ¦ Ileostomy ~


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Chris
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November 3, 2018 11:54 am  

Hey Eric. My sleep problems center around just always being aware that I have a bag attached to my stomach as I move around.  Also, I usually get up twice through the nite, and when I'm up I'm UP. I think it is different if you just have to get up and pee because that can be done half asleep. But to organize a relatively clean empty of the bag requires a little more of an alert state of mind - at least for me it does. So then I'm up.

Takes me forever to get back to sleep. I usually do however, but it's just in time to get up and do it all over again. Lol.

 

 

 


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Valerie
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November 3, 2018 12:40 pm  

Sleep has become more of a problem the older I get. I'm 55. Taking melatonin before bed helps me get back to sleep if I have to get up. I learned the hard way not to try to empty a bag when you're half asleep. Turn on a light, get a drink of water, and give yourself a second, lol. My sleep has improved greatly thanks to some tips from this blog. I started using M9 deoderant which has cut down on gas, and using a gel packet thickener. The gel pack absorbs the liquid so it is not sitting on your stoma while you sleep. I also started wearing underwear to bed when I got my stoma since I didn't like the bag flopping around in the night. I sleep on my side, switching sides in the night to stay comfortable.

UC at age 18, 1981. Diagnosed at 20, proctocolectomy with permanent ileostomy at age 23, 1986.


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john68
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November 3, 2018 3:21 pm  

Hi Chris, May I ask does this awareness come from having a bad leak while sleeping. Having yer last meal a few hours before bed is a big help. During the day the bag and wafer will go through more movement than when we are sleeping.

ileostomy 31st August 1994 for Crohns


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VeganOstomy
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November 3, 2018 11:00 pm  
Posted by: Chris
 
Also, I usually get up twice through the nite, and when I'm up I'm UP. I think it is different if you just have to get up and pee because that can be done half asleep. But to organize a relatively clean empty of the bag requires a little more of an alert state of mind - at least for me it does. So then I'm up.

Takes me forever to get back to sleep. I usually do however, but it's just in time to get up and do it all over again. Lol.

I can certainly understand that. I wonder if your GP could prescribe something to take that's mild enough to use midway through the evening to help get you back to sleep, but weak enough not to effect you in the morning. 

As for being aware that you have a bag on while you're moving around, I find it really helps to wear a support belt or even an ostomy wrap (although, I rarely do at night anymore). This might also be one of those things that "goes away" as you get used to it. 

Just your friendly neighborhood ostomate.

~ Crohn's Disease ¦ Ileostomy ~


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Bubbles
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November 4, 2018 12:16 am  

Try wearing Ostomy underwear. The inner pouch holds the bag in place so no flopping around . They make them for men too.


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Susan
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November 4, 2018 2:04 pm  

Hi. I do not sleep well at all anymore. I am up twice at night and need to empty my pouch, I take Metamucil 2x a day as a thickener abs use Gel-X tablets. I use 2 since my insurance only covers one bottle.  It is hit or miss with thickening my output. I really do not know what to do anymore. I am not able to cut to fit. My barrier is pre-cut, the next size is too large,  it covers my whole stomach, I am short waisted and chubby (FAT) so and have physical degenerative disease in most of my joints. With 5 layers at my waist I have trouble bending over. Once on the floor, it is a joke just trying to get up off the floor. I live alone, I have no friends in the State I live in and no help from family. Doing this alone has been my worst nightmare. Who knew this could be worse than my brain surgery 12 years ago. My Stoma Nurse has no time to talk to me. 

I am just existing with this interrupting my lifestyle as I am 65 and not like I was 20 years ago. 

I do not know what gelling product is better than the Gel-X tablets. 

Sadly, I am not happy and that could be due to not the right kind of sleep since last February 2017. I have not slept through the night since I had my Ileostomy for 2 years yet. I get woken up during the night if my ouch gets full and my company does not make an extra output pouch for overnight and the barrier adhesive from other brands irritate my skin like a pins and needles feeling.

Not sure I will every be happy about it. For me, it is an annoyance and interrupts just being. Taking a shower  takes 45 minutes to get into the shower so I cannot just “jump into the shower” like I did. Taking a shower with my appliance off has me baffled as to how to cover my Stoma just to dry off with a towel and then I am not dry for 2 hours, I sweat even with a colder rinse. 

So, Bubbles, try the Gel-X tablets but there is a product by Eakin thst is not available in the US that looks like it would work better. 

I just do not know how to make this or be happy about this horrible thing on the front of my body and it really makes me sick when I have to empty my pouch before I eat a meal. UGH!!!

I am at a total loss and totally alone. 

I am glad everyone is so happy. I will never be happy with this and it cannot be reversed and I can’t lose weight. 

Any suggestions from anyone?

Sorry I am not happy about this. I just have no energy and it was questionable before my surgery. 

 


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john68
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November 4, 2018 2:32 pm  

Hi Susan, Nothing is impossible, nothing cant be over come or changed. Accepting what we have is the first step. I feel for your situation and would suggest going to a Doctor and laying your feeling out. If your current stoma nurse wont listen their is one who will.

ileostomy 31st August 1994 for Crohns


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VeganOstomy
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November 4, 2018 3:19 pm  

Hi Susan, 

It sounds like you're in a bad place and I empathize with you.

Has it ever been suggested to try a night drainage bag or high-output bag? That would prevent you from needing to empty so often at night. 

Many brands will have their own version. But most will work with their two piece system (so you can swap it for regular bags during the day).

You should also try to seek help from another nurse. Your nurse should be willing to problem solve with you and it doesn't sound like that's happening. You an even do telenursing if finding one locally is too difficult. 

Just your friendly neighborhood ostomate.

~ Crohn's Disease ¦ Ileostomy ~


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SMV
 SMV
(@smv)
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November 4, 2018 4:05 pm  

I stop eating 3-4 hours before bed, take an Imodium about 30 min before (please check with your doctor first!), empty my pouch, toss in a few Ile-sorb packets (I have liquid output with ileostomy so need more than one), and go to bed earlier than pre-ostomy days because I sort of awaken a few times in the night to check my bag.  Another strategy I tried that didn’t work for me but makes a lot of sense is to set your alarm for a few hours after going to bed. Knowing that you will wake up and empty can let you sleep more soundly before/after and it can also prevent leaks.  If you use a two-piece, perhaps you want to try a large bag at night. You will find a system that works for you. Sleep is really vital, so good for you for addressing your challenge!


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Sydneychic
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November 4, 2018 4:07 pm  

Hi Susan

I am sorry to hear how you are feeling.  It is sometimes a hard thing to accept.  I had my surgery in March 2017, permanent ileostomy and proctocolectomy.  I have my bad days but I tell myself I probably wouldn't be here without the surgery.  For me that's a plus.

One tip I have for you regarding showering.  I have a cloth diaper or hand towel for the top half of me whilst still standing in the shower recess, then I put a piece of chux (we call it this in Australia, it's like a woven thin disposable cleaning cloth) folded over the stoma and then sit on the toilet and dry myself with a normal towel.  The chux kinda sticks and stays there while I am sitting down, bending a bit over drying my feet.  Hope this makes sense.  It saves the big towel from touching the stoma.  If it starts to produce, I just stand in the shower until it stops and then wash myself again.  I change every day so don't often shower with the bag on.  If I do then I use a hairdryer to dry the bag off.

I don't think any of us sleep through the night without having to empty.  My bag fills with wind as well as output.  Sometimes it a bit risky opening the bag! I find it hard to get back to sleep after getting up.  I only sleep on my left side and back.  

The one thing that really changed the way I see my stoma and bag is to use a bottle of water to rinse it out at every empty.  I feel clean and I hate when I haven't my bottle with me.  It has made such a difference to my confidence.  I also haven't had a leak since I changed to the sensura mio soft convex bags, one piece.  They mould around any bumps and lumps.  I also use a Brava semi circle elastic tape on the bottom half of my bag.  It adds a bit more seal.

I hope you can find some peace with what is happening to you.  This site of Eric's is wonderful and saved my sanity when I first had my surgery.  He has so much information that the stoma nurses didn't give in the hospital.

Good luck and stay in touch on the forum.

 

1541365667-chux-wipes.png

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Susan
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November 4, 2018 8:38 pm  

Because of my HMO, I can only go to the Stoma Nurse at the Hospital in my Insurance plan. I do talk to someone. I take it half a day at a time. I am dog the best I can bring alonr without much support. Thank you for your kind words. 


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Susan
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November 4, 2018 11:17 pm  

Hi Sydneychic. Thank you for your response. We have no product in the USA or where I live comparable to Chucks. I was wondering, since I hate putting out my personal health issues on a Blog, if you could email me. There is a lot of info and it is very private. My email is:   snorth2@me.com and I will be happy to explain things and especially how my life changed from a Neurosurgery in 2006. So that would help me help you and I have Insurance restrictions and other details that to me are private. Otherwise, I still do not know how I can shower without my porch & barrier on and folded up and even trying to cover it with plastic wrap, it gets wet but it dries quick if I blow it dry. There are just other issues I would like to get your opinion about. If not, thank you for sharing.  Susan

 

 


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