Sleeping with an Ileostomy

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versed1mg
New Member


Date Joined Apr 2011
Total Posts : 2
   Posted 4/10/2011 9:02 PM (GMT -6)   
Is there a way of getting sleep without waking up 3-4 hr to empty the bag?

RiddleMeThis
Regular Member


Date Joined Nov 2010
Total Posts : 255
   Posted 4/10/2011 9:14 PM (GMT -6)   
I used to wake up once every night to empty my bag and I'd sleep for about 10 hours. Now I normally don't even empty it, but 'burp' it instead because mine generally fills up more with air than with output. When I wake up though and completely empty the bag, it's pretty full.

I also suggest not eating a few hours before bedtime. That way there won't be a lot of output for your stoma to let out.

Rock89
New Member


Date Joined Mar 2011
Total Posts : 5
   Posted 4/10/2011 9:34 PM (GMT -6)   
RiddleMeThis is right, you have to limit your eating in the late evenings.
I would say 3-4 hours a night is about normal. My bag is always about
1/3 full when I empty out. I seemed to sleep better knowing my bag is
 empty. It will come down to trial and error, what works best for you.

summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 4/10/2011 9:37 PM (GMT -6)   
i dont know how long its been since you had your surgery, if it's been less than 3 or 4 months, there isnt really a lot you can do. the output is just heavier.
but after that, you can limit eating, but that doesnt help me any, i could not eat after noon, and still somehow manage to have a full bag about 5-6 am! no idea where that comees from, lol. you could take some immodium before bed. or you could watch and see what foods cause more output.
UC for 8 years, before finally kicking its butt and having a permanent ileostomy April 17 2007!
-I have gone to find myself, if i get back before i return, keep me here-
No matter what kind of day you are having, take five minutes to sing loudly and dance like a fool!

Blueheron
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Date Joined Feb 2010
Total Posts : 710
   Posted 4/10/2011 10:29 PM (GMT -6)   
I am like Summerstorm. Whether I eat before 4 p.m. or at 9 p.m., I still have to get up once during the night to empty.  I think my stoma likes to wait until I am sleeping to do his little dance!  I remember being really worried about it after surgery and trying to eat early every day.  It sucked because friends never wanted to go out that early, or if I wanted to go for a hike after work I would get all stressed about my eating schedule.  Once I started eating later and saw that it didn't really make a difference, I just returned to my old meal schedule for the most part. In fact, I just had a bowl of ice cream. I usually have to get up to pee at least once during the night anyway since I try to stay really hydrated, so I just empty then. I am a good sleeper so I am usually able to fall asleep in a few minutes again.  For folks that have trouble falling asleep, emptying would probably be a bigger deal.
-Officially diagnosed with UC in 2006, though had symptoms since 1999.
-Had mild/moderate symptoms continuously until severe flare in autumn 2010 which required 2-week hospital stay
-Took Asacol, Rowasa, Canasa and Prednisone to manage flares but meds stopped working
-Tried 1 infusion of Remicade but had excruciating joint pain and discontinued
-Had permanent ileostomy surgery 11/8/2010

smackie
Regular Member


Date Joined Feb 2011
Total Posts : 55
   Posted 4/10/2011 11:14 PM (GMT -6)   
I concur with the above. If I eat early then it doesn't help with my output / I seem to produce hardly anything till I sleep.

I sleep right through about half the time and the other half get up to go No.1 and choose to empty my bag. The biggest problem for me is the high levels of gas at night. The filter seems to be quite useless and after a meal with brocolli, onion and lettuce last night my bag was rock solid with gas. Glad I have a good seal on my skin!

If i eat pretty bland non gas producing foods and lower residue foods then the bag is a lot emptier in the mornings. Also having a newer bag means a newer filter, which can help.

Also agree that imodium can help thicken the output and reduce the amount.
Jul 06 - Dx with Coeliac
Sep 06 - Dx with Crohn's
Oct 10 - Pancolitis subsequent to a campylobacteriosis infection
Dec 10 - Dx Crohn's (GI) / Dx UC (Surgeon) / Dx Indeterminate colitis (Pathologist)
Dec 10 - Subtotal Colectomy & End Ileostomy [complicated by high dose IV steroids]
2011 - The year of recovery
2012 - Ileosigmoid anastomosis? J-pouch? Total proctocolectomy?

stripey
Veteran Member


Date Joined Feb 2011
Total Posts : 1008
   Posted 4/11/2011 1:56 PM (GMT -6)   
I have a high output ileo due to short bowel syndrome and can have to get up twice a night depending on what and how much I eat. Doesn't seem to matter what time it is but after my recent flare of CD have tried to eat lower residue foods in evening to reduce output. I am also havign to take immodium 3 times a day and although that and the codeine works to slow things down this then increases the gas son to counteract that I take simethicone (Gas X) 3 times a day with one just before bed and this seems to help with the gas a lot. This means now I get up normally once a night but most of time can sleep through.
Crohn's dx 1989, loop ileo 1992, end ileo 1992. Arthritis developed 1990 Stoma abcess 1995. Azathioprine started 1995. Panprocolorectomy 1999. Stillbirth 2000, antiphospholipid syndrome dx 2000. Flare up 2004, stoma abcess and strictoplasty 2004. Low blood pressure dx with impaired kidney function 2006, fludrocortisone pres. flare up 2010, steroids, Humira, codeine.

Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3071
   Posted 4/11/2011 7:55 PM (GMT -6)   
Sometimes not eating can cause more gas because there is nothing in your system and your body still works things through...which is why you get gas:(

Have you tried Imodium? That slows things down and could give you enough time to sleep.

Personally, I eat right up until bedtime and do better with crackers or something small to carry me until I get up. I don't usually get up to empty and if I can sleep without breathing through my mouth (air goes straight into your digestive system) I do even better!
formally known as OHIO76 ~ honoring my daughter's passion!
Crohn’s dx 1989
some terrible years before my temporary ileo in 2001
Proctocolectomy w/end ileo in 2008
...wish I knew then what I know NOW!

summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 4/11/2011 9:19 PM (GMT -6)   
yeah she's right not eating does cause gas, and it might be what you are drinking too.
like last night, i ate dinner at like 6, all that came out, i know it did, cause i could tell what it was, lol. and somehow at 4am i wake up and my bag was so full i couldn't believe it didn't bust open!
UC for 8 years, before finally kicking its butt and having a permanent ileostomy April 17 2007!
-I have gone to find myself, if i get back before i return, keep me here-
No matter what kind of day you are having, take five minutes to sing loudly and dance like a fool!

Blueheron
Veteran Member


Date Joined Feb 2010
Total Posts : 710
   Posted 4/11/2011 9:33 PM (GMT -6)   
Too funny Summerstorm.  That happens to me all the time when I eat early.  I get up in the middle of the night and am like, "where is this coming from?  I know I already pooped out dinner!" That is why I have given up on trying to eat on a schedule.  It doesn't matter anyway.

run4pancakes
Veteran Member


Date Joined Oct 2008
Total Posts : 938
   Posted 4/12/2011 9:35 AM (GMT -6)   
I seem to be able to sleep about six hours which is pretty good. I have two very young kids, so a full night of sleep is a foreign thing to me anyway. :-)
UC dx 2/08

Done with the drugs. Step 1 (of 3) J-pouch surgery 3/22/11, Steps 2 & 3 TBD
http://life-takes-guts.blogspot.com/

Another UC wife
Veteran Member


Date Joined Jun 2007
Total Posts : 2111
   Posted 4/26/2011 8:16 AM (GMT -6)   
With my husband due to the amount of water/liquid to stay properly hydrated, he gets up a couple of times a night to pee more than needing to empty the pouch. So since he is up he does both.

If many of you are sleeping through the night basically then when do you stop drinking fluids might be the question/answer that might help him out.
64 yr old male suffered with UC & in May 06 had a severe flare & hospitalized 6 days...various prednisone treatments leading to steroid dependence and osteopenia, 12 asacol, 200 mg Imuran, failed remicade infusions Jan-May 2010 Dependence on pain meds. Made decision 6/10 to have surgery which was on 12/17/10 (total proctocolectomy & ileostomy - unable to have the j-pouch) and no longer in pain.

smackie
Regular Member


Date Joined Feb 2011
Total Posts : 55
   Posted 4/26/2011 9:26 AM (GMT -6)   
I drink an average of 3L of hydrating fluids (water, sports drinks, herbal tea, juices) a day. I try and have more in the mornings and afternoons but don't restrict myself at night [prefer to get up at night rather than be dry]. I normally have a decaf tea or water just before bed.

I find alcohol and caffeine gets me up during the night to pee so if I have any I know I'll be getting up. But otherwise it's probably only every second night. Been sleeping 8-10hrs as I'm still off work (for a couple more weeks).
Jul 06 - Dx with Coeliac
Sep 06 - Dx with Crohn's
Oct 10 - Pancolitis subsequent to a campylobacteriosis infection
Dec 10 - Dx Crohn's (GI) / Dx UC (Surgeon) / Dx Indeterminate colitis (Pathologist)
Dec 10 - Subtotal Colectomy & End Ileostomy [complicated by high dose IV steroids]
2011 - The year of recovery
2012 - Ileosigmoid anastomosis? J-pouch? Total proctocolectomy?

stripey
Veteran Member


Date Joined Feb 2011
Total Posts : 1008
   Posted 4/26/2011 1:29 PM (GMT -6)   
In last week or so my output is now more or less under control and am sleeping through the night about 8 hours. I don't restrict the amount I drink as having short bowel syndrome means I dehydrate quicker than normal ileo. I only have decaff tea at home and maybe that helps but I aim to drink 250ml every 90 mins or so whilst I am awake and always have drink by bedside especially in summer and recently as it has been really hot in UK, but weather turning colder again now, so that was our summer - roll on the rain as usual.
Crohn's dx 1989, loop ileo 1992, end ileo 1992. Arthritis developed 1990 Stoma abcess 1995. Azathioprine started 1995. Panprocolorectomy 1999. Stillbirth 2000, antiphospholipid syndrome dx 2000. Flare up 2004, stoma abcess and strictoplasty 2004. Low blood pressure dx with impaired kidney function 2006, fludrocortisone pres. flare up 2010, steroids, Humira, codeine.

puddney
New Member


Date Joined Mar 2011
Total Posts : 13
   Posted 4/26/2011 3:44 PM (GMT -6)   
hi i had op 10 weeks ago and have a bigger bag for night time and get about 8-9 hours this was the only way of getting a good nights sleep as my day bags fill up to quick
hope you get it sorted
good luck x
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