Ostomates, do you sleep through the night?

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killcolitis
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Date Joined Dec 2009
Total Posts : 2396
   Posted 7/10/2010 2:32 AM (GMT -6)   
Hi all,
My daughter has pancolitis and we are desperately trying to find a way to put her into remission. In the mean time, I've been researching surgery (very frightening). On Jpouch.org, some of the ostomates have mentioned that they "only" get up once or twice a night to empty. Is this normal?
Thanks for your help!

crohnielass
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Date Joined Mar 2009
Total Posts : 1118
   Posted 7/10/2010 4:24 AM (GMT -6)   
Hi when I had my ileo for the first few weeks I would empty quite a few times a night but, once it settled down and i stopped eating before 6pm I would not have to get up at all through the night also, I would put in gel sachets that you get from the supplier to put in the bag and it would soak up the fliud into a gel which then stops the poop from sloshing around. hope this helps Bev x 
Diagnosed with crohns at 13 now 43
Still battling with Doc's to get me on maintenance Meds only taking
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Shaz032
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Date Joined Feb 2003
Total Posts : 1251
   Posted 7/10/2010 5:06 AM (GMT -6)   
I don't usually to empty my bag during the night (unless I've had an unusual amount to eat/drink - I've never followed the 'eat before 6pm crowd' - I eat when I want to lol). I go to bed around 10.30pm - 11pm and get up around 7am on weekdays. On weekends, it's more likely ro be around 12am - 1am and get up at 8am to empty my bag (I'm usually needing to pee by then anyway) then back to bed and sleep again till noon (Ohhh... the joys of being single!)

These days (as I get older) I'm more likely to have to get up in the middle of the night to pee (and then empty my bag as a matter of course) than because my bag is full.
Ileostomy for 34 years due to UC. I had my surgery at 10 years of age.

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NewShinyCD
Regular Member


Date Joined Oct 2009
Total Posts : 474
   Posted 7/10/2010 7:45 AM (GMT -6)   
I get up about once a night but thats because I eat about 2 hours before I go to bed. There has only been one night were I emptied two times but that was because I ate and then went straight to bed.
It's become more of a robotic thing now; I can wake up, go to the bathroom, and then go back to bed very easily. Takes no more than about 5 minutes if that.

Before with UC I would wake up about 3 times a night and I was in the restroom for 15-20 in horrible pain. Then when I laid back down I had to fight the cramps that you would get afterward.
21 y/o male livin' in Georgia. Diagnosed with Left-Sided Colitis in 2002; re-diagnosed with Pancolitis in Nov. 2009.
June 2010 I beat UC by having surgery.
Drugs tried: Just about every 5ASA medicine, enemas, prednisone, turmeric, fish oil, Remicade, psyllium seed powder, Metamucil.
Unable to take 6MP.
Step one of Jpouch surgery - 6/2/2010
Readmitted back to hospital because of blockage (my fault cause I ate Steak n Shake 3 days after being released from surgery) - 6/10/2010
Step two of Jpouch surgery - 9/?/2010


summerstorm
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Date Joined Aug 2006
Total Posts : 6571
   Posted 7/10/2010 9:10 AM (GMT -6)   
i always get up to pee at night, but usually my bad doesnt need emptying then, if it has anything at all in it, i empty it,but usually about 7-8 am it needs emptying.
UC for 8 years, before finally kicking its butt and having a permanent ileostomy April 17 2007!
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flchurchlady
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Date Joined Jul 2007
Total Posts : 2765
   Posted 7/10/2010 12:24 PM (GMT -6)   
When I was sick with Crohn's, I was up every hour throughout the night and never got a good night's sleep. Now, I sleep through the night just fine and do not get up once, which is wonderful. Having an ostomy is a blessing, compared to being sick. :-)
Dx'd Crohn's in '99 at age 28. Proctocolectomy and permanent ileostomy in '06.
Disease-free and medicine-free since surgery and very thankful to be healthy again.


fish1
Regular Member


Date Joined Jan 2010
Total Posts : 106
   Posted 7/10/2010 1:13 PM (GMT -6)   
I had surgery on Feb 2010 and I am going to bead by 10 and usually empty about 5am..I also eat that late snack sometimes at 8pm. Like everyone this is so much better than where I was and I never have had trouble going back to sleep! tongue
50 yr old man, Colon Cancer survivor 2005
90 % of colon removed 2005 The rest 2-23-10
Illistomy scheduled for Feb-23-10 Done!
Healing up March 2010
<*(((((><


killcolitis
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Date Joined Dec 2009
Total Posts : 2396
   Posted 7/10/2010 1:15 PM (GMT -6)   
Thanks all for your replies. What's the longest you go without emptying? Would it be about eight hours?

pam222
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Date Joined Jun 2009
Total Posts : 985
   Posted 7/10/2010 1:34 PM (GMT -6)   
I had abnormally high output and emptied pretty much hourly day and night
27/F Diagnosed with unspecified UC 11/08 (symptoms for over a year before)
Asacol, Prednisone, Remicade with no success--no remission for over 2 years
8/09 colonoscopy shows that the whole colon is affected
12/18/09 Removal of colon, creation of J-Pouch and ostomy; recessed stoma; 12/30/09 Takedown too soon; RV fistula;1/9/10 Second Ileostomy Surgery;
1/25/10 Stoma Revision Surgery; 3/30/10 Takedown again; 6/9/10 Scope and Biopsy--Diagnosed with Crohns Disease (maybe...)
Tried gluten free and dairy free with no noticeable improvement; Was on TPN and IV fluids 2/10-6/10. Currently:Prednisone 40 mg, Culturelle, D, B12, Iron, Prenatal vitamin, Lomotil, Lortab, Humira, Rowasa


julsgirl
Regular Member


Date Joined May 2010
Total Posts : 37
   Posted 7/10/2010 11:01 PM (GMT -6)   
wow emptying hourly day n nite?? how tiring!

i usually only have to get up once thro the nite depending on wat iv eatin at wat time like the rest. its not to bad,

sammies
Regular Member


Date Joined Feb 2008
Total Posts : 493
   Posted 7/11/2010 1:20 AM (GMT -6)   
I've had my ileo since Feb 09. Regardless of what and when I eat, I empty around 2 or 3am, then around 5am, and then when I get up. Sometimes, I'm up more due to gas and ballooning.
25 years with Crohn's/colitis; fistulizing crohn's; ileostomy and proctocolectomy; propranolol, xanax, procrit, ursodiol; anemia of chronic disease, PSC, kidney issues from crohn's as well


polishdan
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Date Joined Mar 2010
Total Posts : 1595
   Posted 7/11/2010 10:28 AM (GMT -6)   
Ileostomy 2 1/2 years ago. I snack all evening on chips, nuts, candy bars, leftovers and watever I see that doesn't move. Bed usually about 11 PM. Empty and pee then. Usually out of bed 8 or 9 AM. I never get up to empty or pee. Very often when I do finally get up my pouch looks like the Hindenburg, and ready to blow up! If digestive gas floated like helium I would be stuck to the ceiling!!

Dan

TMC
Regular Member


Date Joined Jul 2010
Total Posts : 88
   Posted 7/11/2010 12:32 PM (GMT -6)   
ILeostomy after total colectomy - I usually am up 2 or 3 x during the nite. It can vary depending on what and when I eat, but twice a nite is probably the minimum with 4 or 5 the max.

killcolitis
Veteran Member


Date Joined Dec 2009
Total Posts : 2396
   Posted 7/11/2010 3:34 PM (GMT -6)   
I'm glad I asked. This never crossed my mind. My daughter's very young and sleeps 11 hours so this would be one (more) potential issue.
Thanks again.

burnabygirl
Regular Member


Date Joined Jun 2008
Total Posts : 205
   Posted 7/11/2010 4:17 PM (GMT -6)   
I sleep 9-10 hours every night without having to get up to pee or empty my pouch. I had my surgery in late March and have a permanent ileostomy. In the first 2-3 weeks after surgery I couldn't sleep very well. I would wake up in the middle of the night to find that my pouch was inflated like a balloon, but with just a little output. Then I learnt to sleep with my mouth closed. Since then I have much less gas in my pouch when I wake up.
I usually eat my dinner at 6pm. Have some snacks with water/juice by 10pm before I go to bed at about 11 o'clock.. I sleep at least 9 hours. When I wake up my pouch is usually less than 1/3 full.
So everybody is different.
Ulcerative proctitis diagnosed in July 2006. Medications: Salofalk enema nightly. Remission from Nov 2006 to Oct 2007. Then a bad cold and a bad flare for 1 year till Nov 2008.
Pancolitis diagnosed in April 2008. Previous medications: Salofalk enema, Salofalk suppositories, Salofalk tablets 1000mg x 4/day, Entocort enema

Supplements: Calcium with Vitamin D, Vitamin B Complex, Omega 3, Vitamin C, psyllium capsules (Metamucil), iron pills.

Flared since July 2009. Hospitalized from Nov 22 to Dec 14, 2009. Discharged with Prednisone and Cyclosporine. Hospitalized again on March 15, 2010. Had surgery on March 26, opted for permanent ileostomy and now live a new life.


Equestrian Mom
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Date Joined Mar 2008
Total Posts : 3115
   Posted 7/11/2010 7:34 PM (GMT -6)   
Yup, we are all different!

Like many, I don't get up nearly as much as I did pre-ostomy, and usually sleep through the night (10/11pm to 6am)...it's usually to pee if I do smilewinkgrin

I eat/drink when I want and don't stop at any specific time...and like burnabygirl mentioned...sleeping with your mouth closed does make a difference in the air that empties into the pouch during the night.

Staying away from straws and learning to keep her mouth closed when eating will make a difference, too.

There are also different size pouches that could be used. A smaller one during the day and a larger one at night could make life a lot easier!!
Crohn’s dx 1989
some terrible years before my
Proctocolectomy in 2008


burnabygirl
Regular Member


Date Joined Jun 2008
Total Posts : 205
   Posted 7/11/2010 8:03 PM (GMT -6)   
OHIO76, I have to thank you and summerstorm for the suggestion of keeping my mouth closed during my sleep previously. It really makes a huge difference.
Ulcerative proctitis diagnosed in July 2006. Medications: Salofalk enema nightly. Remission from Nov 2006 to Oct 2007. Then a bad cold and a bad flare for 1 year till Nov 2008.
Pancolitis diagnosed in April 2008. Previous medications: Salofalk enema, Salofalk suppositories, Salofalk tablets 1000mg x 4/day, Entocort enema

Supplements: Calcium with Vitamin D, Vitamin B Complex, Omega 3, Vitamin C, psyllium capsules (Metamucil), iron pills.

Flared since July 2009. Hospitalized from Nov 22 to Dec 14, 2009. Discharged with Prednisone and Cyclosporine. Hospitalized again on March 15, 2010. Had surgery on March 26, opted for permanent ileostomy and now live a new life.


Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3115
   Posted 7/11/2010 8:06 PM (GMT -6)   
Glad to hear it burnabygirl!! It isn't easy to do but so worth trying:)
Crohn’s dx 1989
some terrible years before my
Proctocolectomy in 2008


damagedgoods41
Regular Member


Date Joined Sep 2009
Total Posts : 377
   Posted 7/18/2010 1:11 AM (GMT -6)   
Hi i've had my ileostomy for nearly 10 years now and i still have to get up through the night atleast 2 to 3 times to empty?? My worst time is around 3 to 4 a.m. due to a very high ouput. I never feel like i've had a good night's sleep and usually get up feeling very tired and weary???
 
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Permanent ileostomy,radical hysterectomy & bi-lateral ophrectomy,bi-lateral mastectomy,atonic bladder.
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    Christine1946
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    Date Joined Aug 2008
    Total Posts : 5965
       Posted 7/18/2010 7:21 AM (GMT -6)   
    I had a total colectomy and perm ileo on June 28th. I only have to empty my pouch about four times a day. My problem is drinking enough fluid to stay hydrated because I never did drink too much. I was discharged from the hospital a week ago Friday after an eleven day hospital stay. Had a few complications but thank GOD I was in the hospital when they happened and everything is ironed out.
    I have trouble sleeping at night but then when I had UC I had insomnia too. I believe once I am off the prednisone for good things will get better. Right now I only have to empty the bag once during the night.

    As for the people who say their bags are inflated...I am using the Hollister bags with the charcoal filter....they don't inflate when passing gas...they are great!
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