How many times will I have to empty ostomy pouch?

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supernova
Regular Member


Date Joined Jul 2006
Total Posts : 69
   Posted 2/12/2011 9:22 AM (GMT -6)   
Hey everybody!
I think that I am leaning more towards having a permanent ileostomy. I have a fistula and have had a fissure problem in the past and don't think going 6-8 times a day with the j pouch is such a good idea for my bum. Just wondering though how often you have to empty the ileo external pouch. Do you basically have to make sure you are around a toilet every three hours or are you free to go about your day? Thanks a bunch!

Chevypower1930
Regular Member


Date Joined Sep 2009
Total Posts : 254
   Posted 2/12/2011 9:39 AM (GMT -6)   
Supernova... I lived with an ostomy for about 6 months.. I just got my j pouch surgery last month.

Now about the emptying... You absolutely do NOT have to think about where toilets are... I would work from about 8 AM to 4 PM or so and would empty one time throughout the day. With the ostomy you're going to want to empty your pouch when it's about 1/3 of the way full just for comfort reasons basically, so it's not so heavy and filling up like a balloon haha. So even if you want to empty it and there's not a bathroom around, you will have PLENTY of time to find one.
20 Year Old Male

Diagnosed with Moderate/Severe Ulcerative Colitis May 2008
3 Flair ups (first flair- 2 months/Second Flair- 2 months/ Third flair- One week, then surgery)

Full Ileostomy surgery done on july 22!

Living with an ostomy bag right now and loving feeling healthy again! Finally have gotten this horrible disease OUT of my body!

elddiReMsihT
Regular Member


Date Joined Nov 2010
Total Posts : 111
   Posted 2/12/2011 11:17 AM (GMT -6)   
Seconding what Chevy said.
The ostomy literature says you'll have to empty it 6-8 times a day, but that's not necessarily true. I have pretty low output and I empty maybe 4 times a day.
Diagnosed with UC in 2007
Flare in 2007 causing anemia requiring blood transfusions, eventually controlled by asacol and 6-MP.
Flared again in 2009 as 6-MP lost effectiveness, went on TPN and received more blood. Started Remicade, which induced remission.
Flared 2010; Remicade no longer effective.
Had 1st surgery of 3 step j-pouch at CC on 1/19/11. 2nd slated for April, and j-pouch in July!

Christine1946
Veteran Member


Date Joined Aug 2008
Total Posts : 5512
   Posted 2/12/2011 12:57 PM (GMT -6)   
     Ditto what Eddie says.  I have a permanent ileo and empty about four times a day.  I usually get up during the night to pee and empty then, just for good measure, not that it is necessary.

Another UC wife
Veteran Member


Date Joined Jun 2007
Total Posts : 2111
   Posted 2/12/2011 2:46 PM (GMT -6)   
Hubby empties on the average 4-5 times a day. Sometimes there is very little and since he is in the bathroom to pee he'll empty. You get to know and can sense it.

What is so great is you CAN plan your day/activity or whatever and go a goodly amount of hours and do things and not have that nagging constant urgency frequency (and in a lot of cases PAIN) thing going on any more.

You will spend so little time in the bathroom each day now. When you really get the hang of it -- using public restrooms if needed you're in and out of there in a lot less time than before for sure.
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 in 6/10 to have surgery which was on 12/17/10 (permanent ileostomy - unable to have the j-pouch) and no longer in pain.

supernova
Regular Member


Date Joined Jul 2006
Total Posts : 69
   Posted 2/12/2011 4:06 PM (GMT -6)   
Thanks so much! That is a real reassurance for me. I thought I would have to be emptying it all the time. This may sound like a stupid question. Does the ostomy empty small amounts all the time, or like a regular bowel movement all at once. I know, silly question, but I am trying to make sure I am not in total shock once the surgery is all done and over with.
Did I mention, you guys are awesome!? Well you are! hehe :)

Blueheron
Veteran Member


Date Joined Feb 2010
Total Posts : 712
   Posted 2/12/2011 7:16 PM (GMT -6)   
I have a permanent ileostomy and I empty mine about 6 times a day, including once in the middle of the night. I don't mind the nighttime emptying though. I usually ave to get up to pee anyway.

Right after surgery, I had to empty quite a bit more than this and output was quite watery. That went away at around 7 weeks and now my output is pretty thick.

There is no urgency in emptying. I usually notice it is starting to get full and then wait until a convenient time to head to the restroom. Sometimes I will go in the bathroom to pee and will see that my pouch has a bit in it, so I just decide to empty it anyway even if it isn't 1/3 full. It is easy to empty and only takes a few minutes. If I know I have something to do where I won't be able to get to a restroom for a few hours, I just make sure to empty beforehand. My husband and I went on a little road trip for the holidays, and I made it most of the 5-hour drive without having to empty.

My ostomy tends to go a little bit all day, though there are periods of time when it is inactive. Generally right after I eat is when it is the most active.
-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

villager
Regular Member


Date Joined Aug 2010
Total Posts : 130
   Posted 2/12/2011 7:52 PM (GMT -6)   
Hi supernova, your question is one that I worried about myself before my perm ileo in May 2010 along with many more questions about life after the op. I hope you have the same good experience that I have had since - each week make a 110 mile drive all along motorway with no service areas (ie no bathrooms) - I almost never have to empty but as I drink plenty of water thru the day I nearly aleays find myself eager ! for a pee (this, i did not expect to be the main worry but happy that it is). Also I play badminton for 2 hours twice a week & no-one knows of my op & I have not had any need to empty during those times.

I dont know whether your medical condition caused you any problems with actually using a public loo or one in a restaruant or in a friends house. With UC I would have been really reluctant to use such as anything could have happened in the process & this was very restricting. Now I have no hangups as there are no unknowns - I have a routine which works. You may have worries about smells - this topic is covered by many other posts - I've found some foods are worse than others eg fish, but there are solutions to this too - I use M9 & Nascent (? spelling) drops to good effect.
All going well, you will be able to get on with doing what you want without even thinking about the bathroom. Best of luck.
UC since 1990, not a lot of fun
Qualified as ileostomate May 2010, a much happier boy now
panproctocolectomy, abdomino perineal resection, perm ileostomy
am older, wiser & healthier for this second chance at life & am not gonna mess it up

summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 2/12/2011 9:44 PM (GMT -6)   
an ileo is active like 95% of the time, but it's not gushing stuff out, just little bits come out.
When you first get it, for like the first month or so you will have to empty a lot, the first week i was home it was like every 2-3 hours, and a lot of that was gas, but that doesnt' last!
Now i can go 5 or 6 hours, if i need to. I like to empty mine pretty often, so i just empty it everytime i pee.
This is what i find great about it, if i don't want much output, like when me and my son drove to charleston (4 hour drive) i took two immodium before, and didn't have to empty the whole time! i can take some immodium and keep it from outputting, so i can basically tell it what to do, lol.
And of course, the more you put in the more that comes out.
And emptying only takes like 2 minutes.
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!

J's Mom
Regular Member


Date Joined Oct 2008
Total Posts : 109
   Posted 2/13/2011 8:44 AM (GMT -6)   
We only have to empty my son's about 4 times a day. Mostly later in the day. When we travel (which we do a lot of) I just carry a container with a lid of course :) so I can empty anytime I need to. He wears a diaper for urine so the bathroom trips are not an issue.

supernova
Regular Member


Date Joined Jul 2006
Total Posts : 69
   Posted 2/13/2011 10:27 AM (GMT -6)   
Thanks so much for all the info. So, I guess I can count on a hard first month, then things get better? This is all just so scary! I really want to be rid of the disease, but I am so afraid of life after the disease. I'm lucky I have such a wonderful husband who reassures me over and over again. After years of seeing me go through this (the past year has been the absolute worst), he was ready for me to have surgery a long time ago. He really hates seeing me sick and not being able to do anything to help me. My family is very supportive and think that it's the right choice, but my husband's side thinks it's a horrible idea. I know I need to do what is right for my body, as I can't remember what it is like to not be sick and taking tons of pills. But everytime I hear a remark from them, it makes me second guess my decision. I really wish I could peek into the future and see what it will be like.. something to make this decision easier and less scary. Thanks again.

Christine1946
Veteran Member


Date Joined Aug 2008
Total Posts : 5512
   Posted 2/13/2011 1:42 PM (GMT -6)   
     It's wonderful you have such a supportive husband.  I wouldn't even pay attention to what the relatives are yapping about.  This is your decision, not theirs.  They aren't the ones suffering.  Come to think of it, I didn't even tell my husband's relatives...none of their beeswax.  My husband  was and still is extremely supportive.  He and my daughter, who still lives at home, were the ones who talked me into the surgery.  Personally, I was scared stiff to go through it but very tired of taking all those pills for twelve years and becoming prednisone dependent.
     I had the surgery at age 63 (I am 64 now).  My surgeon refused to do a j-pouch on me because of my age and extensive use of prednisone.  He said it would be too stressful on my body.   There were a few blips, but I got over them.  My surgery was last June 28th.   Life is grand!   I went from taking 17 - 25 pills a day plus the rectal meds down to only 1 pill a day for my blood pressure yeah
     You'll be fine.  Think positive!!!! tongue

Chevypower1930
Regular Member


Date Joined Sep 2009
Total Posts : 254
   Posted 2/13/2011 3:59 PM (GMT -6)   
Just read through the posts and just wanted to second you to buy some M9 drops... they work wonders for smell.... also mouthwash works (listerine) a few drops and the smells gone, M9 is better but listerine works as your stoma is made of the same stuff the inside of your mouth is, so it will never harm it
20 Year Old Male

Diagnosed with Moderate/Severe Ulcerative Colitis May 2008
3 Flair ups (first flair- 2 months/Second Flair- 2 months/ Third flair- One week, then surgery)

Full Ileostomy surgery done on july 22!

Living with an ostomy bag right now and loving feeling healthy again! Finally have gotten this horrible disease OUT of my body!

villager
Regular Member


Date Joined Aug 2010
Total Posts : 130
   Posted 2/13/2011 6:10 PM (GMT -6)   
Supernova, your words of worry prior to the surgery has reminded me of my own mindset in the weeks between agreeing a date and the actual surgery itself. Although the docs & nurses were saying that life will be better in a few weeks / months, I just could not imagine what it would be like, as a result I didnt know if I would in future be able to everything, anything or nothing. I just had no way of knowing what the future would hold.

My situation was that the surgeon said have an ileo by end May 10 or expect to have colon cancer by Xmas with risk of spread to liver. The precursors for cancer where all there. I felt that I was being pushed towards surgery which I had been dreading for years. My logical mind said to avoid cancer but the emotion of fear of essentially being a sicial outcast was very much there too.

Happily all is better for me now in every way I would not have believed before. It did take time to get where I am now but I hope you will find that as each & every week goes by you will feel better. If this forum (and our local one in UK/Ireland http://the-ia.org.uk/forum/default.asp ) proves - there really is a good life to be enjoyed post-op.
UC since 1990, not a lot of fun
Qualified as ileostomate May 2010, a much happier boy now
panproctocolectomy, abdomino perineal resection, perm ileostomy
am older, wiser & healthier for this second chance at life & am not gonna mess it up

bellypooper
Regular Member


Date Joined Feb 2011
Total Posts : 20
   Posted 2/14/2011 3:57 PM (GMT -6)   
I use tic taks or any mint in my bag for oder.works great and not expensive! only empty bag 3 or 4 times a day, like others have said always empty when I pee since in there anyways.
think positive, live life to the fullest!!!
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