Is Emptying My Iliostomy Pouch Frequently Normal?

I empty my iliostomy pouch usually a couple times an hour.  I don't want it to get too full and weaken the flange.

I've found it's "very active" between 8-9am, and 4-5pm.  The slowest time is during the night.

I am also on TPN for my short bowel syndrome.  I drink alot and eat often. Is this unusual?

Still only 105 lbs!

Am I emptying too often?  It's EXHAUSTING being in the bathroom 75% of my day!

Oh, Janice, I don't think you are obsessed, but I know you are tired of dealing with this thing seemingly nonstop.  Short bowel syndrome is certainly going to mean you have a higher output.  The fact that you mentioned you eat and drink frequently tells me that you DO know what to do.   Do you wear the small sized bags?  You are so tiny, it may seem to you that the larger bags are too big and cumbersome.  But a longer bag can be rolled up in your underpants, yet still allow more room for containment and so it takes longer for the bag to strain against the seal.  Also, if your output is highly liquid and you don't let it accumulate because it's harder to empty when it's like that, you might want to try one of those products that you can add to the bag that thickens the effluent (don't you love that word?).   How are things holding up otherwise?  How are those boys?

Hi Janice

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  No sweetie pie, you are not obsessed, you just want to be comfortable and you have valid concerns about leaking.   I like Herculisa's idea for you about finding a longer bag too.  I would suggest the same thing.   The fact that you drink and eat often, in my opinion, in your circumstances is because your body knows what it needs and what it wants to stay 'built up' so to speak.   We all have a lot to learn from each other, I am so glad to see you posting your concerns and sharing things with us

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   I just hope I can be more helpful to you in the future...

~Much love from your Wounded Doe

herculisa, thanks for ur input.  I think you may have me confused with someone else.  I have 2 grown, married children, a girl & a boy, and 2 grandchildren a girl and a boy. The boy just started kindergarten.

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My output isn't liquidy all the time.  I've learned that eating alot of starches help thicken it up. But, what I drink goes right thru almost as soon as I'm done drinking or even before.



Doc says I have less then 2ft. of sm. bowel left.  My body doesn't absorb the nutrients from food, hence the TPN.



He actually says he would like to try another reversal but, wouldn't be for awhile yet.  Still thinking about the bowel transplant in DC.



Thanks Doe! Nice to know people care!



As far as leaking..still having good & bad days.  Most times it lasts for 4 or 5 days...then somedays, I'll no sooner change it & it will leak.



Learning to live with it all....still hating it but......what choice do I have?

Hi Janice!

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  So the cute little beanies in the photo with you are your Grandchildren???  I thought they were your children!  You are so lucky to have beanies...and beanies with beanies lol.   Funny thing, I always wanted to have six kids and ended up with none

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  I was pregnant once but lost the little one when he/she was only the size of a quarter....nothing ever happened again after that.   You are blessed dear.  



All of you reading this who have children are gifted greatly.  

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   ~Doe

How to Manage Emotions with LeeAnne Hayden | Hollister

Yes, they are my grandchildren. ( I started young).  "Gabriel David" is 5 yrs. old & just started kindgergarten.  "Olivia Faith" turned 1 on July 4th and is such a girly girl.  They are the apples of grandma's eyes!

Rick, I can't reply to ur message because I don't have the full membership.



The reason for my short bowel.....had cervical cancer in 2006.  Had hysterectomy & 6 weeks of chemo & radiation.  Developed radiation enteritis (radation damage) to my intestines.  



Had bowel obstruction in 10/07 which they operated on.  That "repair" came undone after I got home, and was being poisioned by peritonitis.  Went in the hospital for this on 12/4/07 and FINALLY was released from the hospital on 2/27/08!  WAS A LONG 3 MONTHS! It was after the repair surgery that I woke up with my first set of ostomies.



Someone did not record everything, and when I got to the doc I have now, he did some tests and realized there was 19 1/2 ft. of my small bowel which was unaccounted for!



I had an ostomy reversal in 9/08 and went off of my tpn.



This past May, my bowel perforated again (while I was on vacation in Florida) and I woke up with the 2 ostomies again and a bit more of my small bowel gone.



Because of such a short bowel, my body doesn't absorb nutrients from what I eat. (and I eat ALL the time!) So, I am on TPN (IV nutrition) for 12 hrs. a day.



I'm learning to live with these bags but I hate them just as much as I did the first time around!

Hi, If you have a good fitting flange & bag you should be able to get pretty full without a problem. Ihave had my ileo for 5 or 6 years not, my doctor told me after a while my small intestine would take over somewhat for the colon and I have found that to be true, i have all my intestine so don't have your problem but with time it should get better.  When I first had my surgery I was so tiny they gave me the small bag, but it makes you have to go to empty too often so I agreed with the idea of a larger bag.  Also if it helps any I am a nurse employeed full time I work 12 hour shifts and have adjusted very well

Good Luck

Eddie

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I hope this comes out the way I want it to...I want to thank all of you. If I didn't read this every day I would fall in the deep hole of despair.  Only with your help do I keep from having a pity party and wonder how I will ever leave the house again.  But then I see you all are surviving with so much more severe situations than mine, I am almost ashamed of myself.  Thank you

Hi Janice,I know what your going through..I have no small bowel left to speak of.(never had a doc call it short bowel thingy tho)..and when I first came out of hospital...I was emptying the bag up to 30 times a day....and the weight kept falling off me...when I got to 39kgs...I started to worry I was going to fade away.Didnt matter what I ate or drank...within 15 to 20 minutes...all gone through to the bag.And because it was doing that...I was starving and thristy ALL THE GOD DAMN TIME.I was surviving just to have a bag,didnt see the point...so thats when I went back and demanded they fix me..Made them put me back on the codiene....and what a life saver its been for me...now..I empty maybe 6 to 10 times a day...obviously the less I eat the less I empty..but I love eating.And now, its not like water all the time...its almost normal....and if anyone knows me..I have never been normal....lmao...in more ways than one...So hang in there Janice..And faith4today....never feel ashamed at feeling a bit low...we all have them days...and yes its true about others doing it worse than us...makes our days look sweet...That is what got me off my butt and start a support group,which didnt last..damn shame there..I remember thinking if this is all there is to my life? emptying a bag and putting a new one on every damn time it leaked,which was more often than not....then this isnt the life I want...NOW!!!! I cant believe how well I am doing...weight is back to some normalicy..not hungry as much...still get very thirsty as the ileostomy drains my fluids away like crazy...But I am the healthiest I have ever been...maybe not the fittest..but all in all...happy with self.Guess all I'm trying to say is...IT DOES GET BETTER AS YOU GO ALONG.... Take care everyone...

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Janice,



I do the same thing...every time I go pee I empty the bag regardless of how much is in it. I just don't want to take a chance of the bag puffing out and being "noticed" I guess as I have a very small frame as well (98lbs). Your normal!!! Everypne else is weird.

Thanks for the support all!!  It's appreciated!



Even though my situation is rough, I too know there is someone who has it worse off then me and, that helps!



I have my bad pity party days just like everyone else.  But, MOST days are good, regardless of how often I have to change these stupid bags.  I too have felt, what's the point??  I don't want to live just to change bags all the time!



But, like you all said, it DOES get easier.



I count my blessings and try to stay focused on them.  It REALLY helps!



Still praying for a SUCCESSFUL reversal this time around.