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Posted 10/11/2013 1:38 PM (GMT 0)
I have had an ilieostomy for two weeks.

I am so tired of emptying it ALL THE TIME. At least every two hours. It's like it never stops flowing! I would love even 10 min of it to stop so I can clean and change the system out.

of course, I'm always drinking because my surgeon said I needed to.

I have to get up every night and empty it and then I am awake and can't go back to sleep for hours.

So, what tips and tricks can I try?


I am a flaring CD patient, about to start Humira. I am on low dose prednisone and flagyl, and a bunch of supplements. Bland diet, low fiber diet.
Posted 10/11/2013 3:01 PM (GMT 0)
were you told to measure your output for a period of time following your surgery? I was told to measure mine every day and keep a log and to make sure my output didn't go over 1200cc (I think that's the unit of measure) in a 24 hour period. If I did then they were going to have to prescribe me some immodium to slow things down for fear of dehydration. What kind of diet are you on? Since my surgery I've never had to really empty mine more than 3-4 times a day and make it through the night with no issues at all.
Posted 10/11/2013 6:08 PM (GMT 0)
Do you have a loop or end ileo? Loops tend to be very high output, and most people need Lomotil to control it.
Posted 10/12/2013 12:08 AM (GMT 0)
I don't know what kind I have. They took a section of the small and large bowel and the ilium inbetween, about 6 inches. I also have a vent stoma.

I was not told to measure output. I usually empty when the bag is about 1/3 full, which is when it begins to feel heavy and bulgy under my clothes.

I am not on any dietary restrictions, I am carefully trying to figure out what I can and can't eat. Because I have CD, I am mostly doing low residue/bland.

It does thicken up when I eat thicker food, but it's still pretty loose. Overnight especially it's totally liquid. If I drink something, within 5 min it's moved through, as liquid.

Is it my GI that I would ask about immodium or Lomotil? I don't have a primary care dr, only the GI or the surgeon.
Posted 10/12/2013 4:03 AM (GMT 0)
I would probably go to your surgeon first and see what he says. It probably wouldn't hurt to tell both. I know both my surgeon and GI have each other on speed dial and have spoken together about me many times. I was instructed by my surgeon and his team to measure my output for 6 weeks following my surgery. They said if it ever hit 1200cc or higher to call them so they could prescribe immodium to slow it down. I was also put on the low fiber / residue diet for the 6 weeks as well. No food containing more than 2gm of fiber, eat all the white breads, pastas etc...I just passed my 6 week mark and he put me back on a normal diet and I no longer have to keep my output log. My output is mainly the consistency of cake batter...sometimes a little more runny but it hasn't been watery for quite some time now.
Posted 10/15/2013 2:24 PM (GMT 0)
The first month or so is a bit of a nightmare with emptying I felt like I was living in the toilet. A couple of tips I use are:
Try not to eat after 6pm
when you do eat try not to drink till at least half an hour afterwards.
Eating white bread, pasta, potato white rice & ripe banana's is also good to help bulk it up a bit You may want to add a bit more salt to your food too
As your output is more liquid in the night you can get sachets which you put in the bag that soaks up the liquid and forms into a gel I use these all the time even through the day they are a godsend for me!

As for the lomotil and immodium the docs might think it a bit soon to put you on it I had to wait for a least 4 weeks after surgery before they gave me anything. All docs are different so you may be lucky to get on something sooner

Hope this helps x
Posted 10/15/2013 4:03 PM (GMT 0)
My ileostomic (I just made that word up, I think) stoma flows 24/7.  As long as there is food in the system, it's digesting and expelling.  You have to figure out when and why it's most active.
Posted 10/16/2013 12:19 AM (GMT 0)
Yeah, it seems nearly constant. I can't manage to find 10 minutes to change it out. I do need to eat in the evenings or I wake up starving at 4 am. Of course, I have to get up to empty my bag anyway and then am wide awake, so I may as well get a snack...
Posted 10/16/2013 12:55 AM (GMT 0)
Have you tried changing first thing in the morning before even taking a drink or eating anything? My nurse told me that's one of the common "dormant" times
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