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VeganOstomy
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03/07/2017 2:49 pm  

Do any of you have any tips to share that has allowed you to have a better night sleep with your ostomy?

One of the challenges is having to empty your bag at all hours of the night. The traditional suggestion is to eat less at night, although that may not work well for someone who has to eat late for one reason or another (i.e. on prednisone or to keep their weight up).

Just your friendly neighborhood ostomate.

~ Crohn's Disease ¦ Ileostomy ~


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Sarah Green
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03/07/2017 5:17 pm  

This may seem a bit OTT for some people lol, but it worked for me...

I had a slow output ileostomy, so it was always quiet during the day and active at night (bit like a stropy teenager). 

  1. I wore a a belt attached to the loops on the side of my bag to keep it firmly attached 
  2. I wore a Comfizz waistband over the top of the bag to support the weight of a full bag
  3. I used a vibrating alarm (that I put under my pillow so as not to wake up my husband) and set it for 3am every morning 
  4. At 3am my bag was full to literally bursting point, but with the support above I would head to the bathroom, empty, back to bed, back to sleep. I got in the hang of not waking up too much
  5. The alarm was then set again for 8am, when I woke again with another full bag
  6. My bag would then be empty till late afternoon when my stoma would wake up again

It's all about finding the right solution for you, everyone's stoma is different depending on their output speed and volume. What is most is to not spend the night worrying, you can't get a good night sleep if you are worrying. Using the technique above I got a good night sleep

After a while, I then started using a slightly different technique, which instead of setting the alarm I would have 2 large glasses of squash before bed. That helped with the hydration and my full bladder would wake me up as my 3am alarm clock

Makes me sound a bit eccentric when I see it in writing 😎


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Dona
 Dona
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03/07/2017 9:16 pm  

Sarah,

I love your solution to use a functioning biological warning ( needing to pee) to wake yourself up for the  new mechanical need to empty your bag! Thats  good.. probably better on your husband that even the muffled alarm clock.

In addition to not eating much food past mid day  I REALLY find the EZ-Vent a big help. The gas still builds up ( even without eating) , and with the vent I can release it without getting up ( or even waking much). I did forget to close it once ... not recommended. When the gas builds up too much it makes me nauseous. Does any one else experience that? Takes about a half an hour to feel better after gas is out. ( to those new to Veganostomy .. Eric has reviewed the EZ-vent).

I also try to keep my cat from sleeping there! Ha.. like a water bed to her. Nice and soft and warm. She is learning. We are learning.

Onset of severe Ulcerative Colitus Oct.2012. Subtotal colectomy with illiostomy July 2015; Peristomal hernia repair ( Sugarbaker, mesh, laparoscopic) May 2017.


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Illona
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04/07/2017 7:24 am  

I need to figure this out!  I was able to go 4 hours without emptying after taking Dona's advice about eating less. Then yesterday I was on a prednisone munchie attack and ate so much that my bag filled with, very liquidy, every hour.  I wake up without an alarm, which is ok but it does mean that I'm probably never getting to REM sleep.

Each time I empty I set a timeclock on my phone just so I know how long I am going.

Today my plan is to eat early and lots of binding foods plus Imodium.  


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Sarah Green
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04/07/2017 10:43 am  

I let the air out of the drainable part of the bag, works ok as long as you are careful


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VeganOstomy
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04/07/2017 10:45 am  

Sarah, what a system! Fantastic!

For the first few months after surgery I was waking up several times a night - it's hard when you need to get a good night's sleep! 

Rather than setting an alarm (that could wake up my wife), I set a vibrating alarm either on my Fitbit or smartwatch. That worked well for me.

Just your friendly neighborhood ostomate.

~ Crohn's Disease ¦ Ileostomy ~


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Illona
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04/07/2017 11:30 am  

How many times are you emptying at night?  My problem is I'm not a great sleeper to start with, and when emptying the bag it's a whole production putting the light on and everything.  By my 3 am bag change I'm lucky if I can fall back asleep.


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VeganOstomy
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04/07/2017 1:22 pm  
Posted by: Illona

How many times are you emptying at night?  

Well, my sleep schedule isn't "normal" and I tend to eat late and go to bed late! I'd say on average, I'm waking up only once at night, but really early in the morning (like 6am).

When I don't eat very late and go to bed at a reasonable time (i.e. when I travel), I don't tend to wake up in the middle of the night anymore. 

But as a new ostomate, I was getting up like 3-4 times a night.

Some people use night drainage bags, which aren't common across all brands. I have a photo of one HERE.

Barring the use of a night drain bag, try to wear the largest bag you feel comfortable with (which is usually a 12" bag or "large" as many brands call them).  This will at least give you more capacity compared to "standard" size bags that need to be emptied more often.

 

 

Just your friendly neighborhood ostomate.

~ Crohn's Disease ¦ Ileostomy ~


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Illona
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05/07/2017 8:50 am  

Thanks for the info about the big bags and stuff.  Last night was a bit better, I think I was able to sleep almost 3 hours in a row at one point.

Today I'll find out if I can go off this prednisone so I can resume my chemo.  I think once I'm off prednisone it'll be a lot easier for me to avoid eating so much before bed.


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Sarah Green
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05/07/2017 4:03 pm  
Posted by: Illona

How many times are you emptying at night?  

What is more important than the number of times you empty your bag is to put a system in place so that you aren't worrying in between times, otherwise you won't be able to sleep. So for me I got 4 deep hours sleep, up to empty the bag and then another 4 hours of deep sleep


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Sarah Green
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05/07/2017 4:06 pm  
Posted by: VeganOstomy

Sarah, what a system! Fantastic!

Did say it was quite excessive lol, but I get so grumpy if I don't get a good night sleep 😴


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Illona
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07/07/2017 10:47 am  

Sarah I agree about not worrying about the system.  I had a very rocky start nd did not trust it at all but now I am actually about to forget it's on me sometimes!

good news, I am able to resume my chemo today and my prednisone dose is being reduced.  The BEST news though is I am approved to go back to work!  I now have that to focus on instead of my bag

 

:-)


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Sarah Green
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07/07/2017 11:12 am  

That's excellent news, I'm really pleased for you. 

Most people wouldn't want to go back to work, but it's good to have that normality back in your life


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Illona
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07/07/2017 3:34 pm  

Thank you for the nice words.  A little bit about me, I'm addicted to traveling, so if I'm not working my traveling days are over.  So I'm very excited to get back to it!

Plus it'll be nice to have work to focus on instead of my new friend the bag.


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Dona
 Dona
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07/07/2017 5:28 pm  

That is wonderful news! Going back to work and getting to travel again. For my part, I was just happy to get more than 10 feet from my toilet on a regular basis!

You WILL adapt to all this and get on with living!

Onset of severe Ulcerative Colitus Oct.2012. Subtotal colectomy with illiostomy July 2015; Peristomal hernia repair ( Sugarbaker, mesh, laparoscopic) May 2017.


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VeganOstomy
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07/07/2017 6:21 pm  
Posted by: Illona

I'm addicted to traveling, so if I'm not working my traveling days are over.

I have the travel bug, so I completely understand where you're coming from. 

Just your friendly neighborhood ostomate.

~ Crohn's Disease ¦ Ileostomy ~


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Illona
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08/07/2017 9:07 am  

Ok I promise not to inundate this site with my own personal minutiae, but for newbies the info might help.

I had chemo yesterday and my prednisone dose reduced.  I was less hungry yesterday though I did eat a Cadbury chocolate bar at night (my bad).  I fell asleep a bit later than usual.  Next thing I know, it's 4 hours later, bag very full, so I emptied and reset my timer.  I slept AGAIN till 7 am!  This is my longest stretch of sleep since before my surgery.

New to ostomy friends, do not despair, it really does get better.  

Also just yesterday I picked up another tip from this site, to line the toilet rim with paper before emptying has saved me having to clean with Clorox each and every time.  All the little hints add up to an easier to manage life.

Today I might go a little crazy and try rinsing the bag out with water.  Do any of you change the bag every day?  I'd love to be able to start each day with a fresh clean bag but do not want to risk weakening how well my system is sticking to me.  My biggest fear is leaking.

have a wonderful weekend friends!


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Illona
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08/07/2017 9:11 am  

Eric,

I decided no plane travel until my reversal surgery but I did book a cruise for October.  Do you think I'll need special medical documentation for TSA?  Not sure if you'd know but can't hurt to ask :-)


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Sarah Green
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08/07/2017 1:51 pm  
Posted by: Illona

Do any of you change the bag every day?  I'd love to be able to start each day with a fresh clean bag but do not want to risk weakening how well my system is sticking to me.  My biggest fear is leaking.

You could always try a 2 piece bag, that way you can change the bag whenever you want to freshen up without changing the flange.


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Illona
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08/07/2017 2:02 pm  

Thank you Sarah, I am using a Convatec 2 piece bag so I guess I can change it without weakening my wafer seal?  The terminology still has me confused, is the flange the wafer part?  For some reason I thought the flange was the bag itself.  


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