sleeping with ileostomy

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artist guy
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   Posted 5/18/2010 7:55 PM (GMT -7)   
my sister has cd and an ileostomy. and she has terrible anxiety over sleeping . she is afraid her bag will come off, anybody who has bag feel that? love to tell her some positive things
artist guy


randynoguts
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   Posted 5/18/2010 8:25 PM (GMT -7)   
i had ajujenostomy and they do come off all the freakin' time. so i feel her anxiety. at least once a week it would blow off in the night. no matter what i tried or what appliance i used. every single one failed sometime while out and about . it was the worst thing ever as far as phsycologicaly. maybe somebody has some good to say but not me.. tell her much good wishes and luck.

also have her put together an emergency change kit in all the vehicle she uses and at friends homes etcc.wherever she spends time. cause its gonna leak
randynoguts 



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NostraHistoria
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Date Joined Nov 2008
Total Posts : 351
   Posted 5/18/2010 8:51 PM (GMT -7)   
I have an ileostomy. Liquid as gone through the area where the adhesive is. It is rare though. It has only happened a few times. You have to put enough ostomy paste on.
UC/Crohn's
Humira

CD/UC story: I took Cipro. Then, I had diarrhea. It felt like my whole colon was burned. It eventually got extremely painful to even have a bowel movement when only one drop of blood was passed. I was diagnosed with c diff. Took Vancomycin and the blood stopped. Diarrhea persisted. Colonoscopy was done and CD/UC was found. Cipro, I hate you and the doctor who put me on it.


randynoguts
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   Posted 5/19/2010 2:32 AM (GMT -7)   
artist guy, nostra may be correct. i should have taken into account the differance between a ileo , and a jujenostomy. by the time the waste gets to the ileo-site it has time to get more pasty and solid as compared to the jujenostomy where its 100% liquid.. so disregard my previous post ;-)
randynoguts 



     http://www.geocities.com/randynogutsweb/


Equestrian Mom
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   Posted 5/19/2010 3:38 AM (GMT -7)   
she could take Imodium before bed which would slow things down and not cause her ostomy pouch to fill up as much.

Yes, a jejenostomy is much harder to care for than a loop or end ileo...I've had a loop ileo (8 yrs) and an end ileo (2.5 yrs) and can count on ONE HAND the problems I've had both day and night!

She could use a body pillow or extra pillow while sleeping and 'hug' it so it protects the area and maybe she won't feel as anxious about it.

How long has your sister had her ileo? Is it permanent? She should check out the ostomies forum...there are many with CD and live active lives with their ileos:)
Crohn’s dx 1989
some terrible years before my
Proctocolectomy in 2008


Nate in NY
Regular Member


Date Joined Mar 2010
Total Posts : 66
   Posted 5/19/2010 5:04 AM (GMT -7)   
I used the Hollister system which worked well for me. Lots of paste when changing. At night I would use the largest vented bags they had. The vent would last a couple of nights then plug and the balloon would form. Keeping the vent as dry as possible helped. Sleeping in an upright position kept the goo away from the vent.
Also I ate my largest meal of the day at lunch so there was not as much discharge at night.
Good luck.
Crohn's 5/10,Bilateral Uveitis
Sigmoid Colectomy x3 January 2009,loop Ileostomy reversed Memorial Day 2009,Gallbladder out the same time(Failed from TPN,or starvation!)
Psyllium and Flax seeds, Metamucil(not sugar free)PB-8 probiotic, omega 3 fish oil, absolutely no Inulin or chicory root, lots of greens


Dunchad
Regular Member


Date Joined Sep 2009
Total Posts : 36
   Posted 5/19/2010 9:54 AM (GMT -7)   
I like to sleep on my side. I've been scared to do that. Afraid that gravity would cause to bag to come off.
Diagnosed Crohns 02. Just had a resection April 20th 2010. Two sections removed had a fistula into the bladder. Also have a temp ostomy. GI said I could stop the 6mp, but going back on remicade.


cleo35
Regular Member


Date Joined Feb 2007
Total Posts : 430
   Posted 5/19/2010 1:23 PM (GMT -7)   
OK, I've had my ostomy for over 4 years and I've only had a problem maybe 3 times. If anyone has a problem or is worried about it - set your alarm for every 3-4 hours and get up and empty the bag. Interrupted sleep is better than no sleep or having to clean up a huge mess in the middle of the night when you're half asleep. Also, be careful what you drink with dinner and after that time - I've found that after 3 1/2 years with no problem, I can no longer drink Pepsi! Trust me, this is a tragedy in my case.

There is a tape who's name I've been trying to remember to get from the box for three days now to tell you about that really gives me a lot of emotional security on this front. I cut 4 strips and put one on each side of the appliance. The tape is wide enough to cover the adhesive part on each side and extend approx. 1/4" beyond that. My ostomy nurse gave me the idea which she got from a friend of hers who lives in FL and is a tennis player. If this tape can withstand the heat and humidity of FL I think it will work in most environments. The tape is in the Edgepark catalog for those of you who get your supplies from there.

cleo35
Regular Member


Date Joined Feb 2007
Total Posts : 430
   Posted 5/19/2010 1:26 PM (GMT -7)   
Dunchad: me too. I put a pillow between my legs - both for my lower back pain and so that I don't roll completely to the side. It works! I slept on my back for the first several months and it was the worst I've ever slept in my life :)

80sChick
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Date Joined Oct 2009
Total Posts : 1054
   Posted 5/19/2010 3:39 PM (GMT -7)   
I've had my ileo for only 2 months, but I haven't had any problems so far. I second what someone said above--get up every 3-4 hours to empty and you should be fine.
Stephanie, 28 years old
Diagnosed with Crohn's Colitis March 2000
Possible diagnosis of IBS-D
Total Proctocolectomy and Permanent Ileostomy 3/18/10!
 
Tried: Asacol, Remicade, 6mp, Humira, Xifaxan, Apriso, Imuran, Rowasa Enemas, Colocort Enemas, Psyllium Seed Powder... Tried Probiotics: Align (with no change except bloating) and VSL #3 DS (AWFUL diarrhea).
 
Currently taking: Prenatal Vitamin, Vitamin B 12 Complex, Biotin, Vitamin D, Calcium, Flomax (for urinary retention). 


Dunchad
Regular Member


Date Joined Sep 2009
Total Posts : 36
   Posted 5/19/2010 5:22 PM (GMT -7)   
Thanks cleo!. Sleeping on my back by the morning my lower back is killing me!
Diagnosed Crohns 02. Just had a resection April 20th 2010. Two sections removed had a fistula into the bladder. Also have a temp ostomy. GI said I could stop the 6mp, but going back on remicade.


randynoguts
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Date Joined Jan 2003
Total Posts : 6049
   Posted 5/19/2010 9:18 PM (GMT -7)   
well guys part of my problem was that i had the jujenostomy, started TPN and had the foot long and 8 inch wide open wound all at the same time.. so my perception is forever tainted by that experiance.. also with the jujen- it is almost directly from the stomach and the acid is not nutralized yet which eats through the stoma paste etc... and it dumps all at once and fills the bag to bursting size in a few seconds. if your living with any type of ostomy i salute you!
randynoguts 



     http://www.geocities.com/randynogutsweb/


andorable
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Date Joined Jun 2005
Total Posts : 981
   Posted 5/19/2010 9:46 PM (GMT -7)   

Hi,

I have had an ileostomy now for just over a year and in the beginning I had a couple of leaks but that was only due to my stoma size changing after the surgery, since then its been pretty good. I do tend to wake up as soon as my pouch becomes full, its almost like an alarm goes off in my head and just know its time to get up and empty so I have never had a leak in bed (thankfully) I also like to have a body pillow to snuggle into it does make me feel much more comfortable when laying on my side. Good luck and take care


crohnielass
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Date Joined Mar 2009
Total Posts : 1118
   Posted 5/20/2010 4:00 AM (GMT -7)   
Hi, I use to use little sachets that you put in the bag which makes the liquid form into a gel these were excellent for sleeping as you will have no leaks The ones i used were called morform but your sisters supplier will be able to advise her hope this helps a bit. Bev x
Diagnosed with crohns at 13 now 43
Meds: Iron syrup,Loperimide,Folic acid & Citalopram 30mg (for Anxiety.)

" I may not be there yet, but I'm closer than I was yesterday."


artist guy
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Date Joined Jan 2010
Total Posts : 1373
   Posted 5/20/2010 6:38 AM (GMT -7)   
great respones, I'll pass the info to sis. I think the problem with her is her and her husband eat to late at night, like 10 or 11, so I think she needs to change her life style a bit

artist guy


cleo35
Regular Member


Date Joined Feb 2007
Total Posts : 430
   Posted 5/21/2010 12:31 PM (GMT -7)   
cronielass: interesting that those worked for you - I never had any luck with them.
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