Overactive Ileostomy at Night: Seeking Advice and Support

Hi all.

I've had a loop ileostomy due to cancer for nearly 6 years. Due to problems following surgery, I developed an anastomotic leak, which caused sepsis, after being discharged from the hospital. I was readmitted and recovered with a drainage operation and lots of intravenous antibiotics.

Because of the damage done during/after the operation, I can't have my dearest wish of a reversal.

My problem now is that my stoma becomes very active during the night, much more than during the daytime, even though I only have a small sandwich to eat, with a small cup of tea, around 7 pm.

It is virtually active when going to bed at about 10:30 pm and continues throughout the night, disturbing my sleep by having to listen to it, then getting up to empty my bag.

I take 2 loperamide capsules just before bedtime, but they don't stop this activity.

I must admit, this is getting me down and affecting my health with depression. I am a male.

If anyone else has or had this problem and could give me any advice on how to ease the situation, I would be eternally grateful. My local doctor or stoma nurse doesn't have any suggestions.

Many thanks, Ron.

What does your daytime diet look like? Are you eating foods that will increase the bulk, such as potatoes, rice, etc.? Have you tried taking the loperamide with your morning and evening meals and not before you go to bed? When I do that, the output from my ileostomy gets quite thick, and I have to back off the evening dose. But, I suppose that is yet another example of how we are all different. And mine is not a loop ileostomy.

I should also ask if this is a new occurrence, or has it been this way for all 6 years.

Daniel

Ask your GP to refer you back to the hospital to see a consultant and dietician if needed, as diet can play a big part in it.

If you have a high output stoma, tea and coffee are the worst things you can drink; they will make your output higher.

Taking loperamide just before you go to bed is a waste of time. You should take it before you eat so it can do its job. Two loperamide is a low dose; you can take much more, but only with your doctor's advice. That's why I would advise speaking to a consultant.

Thanks for responding. It's been like this for about 6 months. Yes, I have an early lunch, about 12:30-1 pm. I always have either boiled/mashed potatoes, or chips, with battered fish, green beans, a bit of broccoli/cauliflower. Chicken breast/thighs in a mild spicy sauce, together with mostly the same vegetables. 1 coffee (caffeine) in the morning, and 1 about 4 pm. Nothing else until 2 thin slices of white bread, as 2 sandwiches, containing ham or cheese about 6:30 pm. I have 2 white toastie slices with a small amount of butter and marmalade. A small cup of tea (no sugar) for breakfast, and the same cup of tea with the evening sandwich. I take a 2 mg loperamide before breakfast, and 1 after lunch. I take 1 or 2 before bed to try and reduce the activity of the loop ileostomy, but it's not solving the problem.

Cheers, Ron.

Hi Ben 38,

Saw GP this morning and she has referred me to speak/see a dietician.

Cheers, Ron

Here in the U.S., that would be called a punt. :-)

Daniel

Can you try to add a spoonful of creamy peanut butter or two? Also, try some short-grain white rice. I've also been struggling, but those have helped me.

Hi Dan,

What do you mean by a "punt"?

Ron.

When would you suggest I take the peanut butter?

Thanks, Ron.

You may want to experiment with psyllium husk powder, sprinkle it on food, or even put it in water and drink it. It absorbs many times its weight in liquid. I took it for a different reason, and it works very well.

What is a punt, Daniel? Does it mean to have a bet? Regards, Iggie

https://www.merriam-webster.com/dictionary/punt#:~:text=transitive%20verb-,1,problem%20back%20to%20city%20staff%20%E2%80%A6

https://www.merriam-webster.com/dictionary/punt#:~:text=transitive%20verb-,1,problem%20back%20to%20city%20staff%20%E2%80%A6

Hi Axl,

Is it safe to take it before bedtime, having an overactive loop ileostomy?

Thanks, Ron.

Hi Ron,

You can take it any time as it simply absorbs many times its weight in liquid and slows down the process. Most take it for other purposes, but it also works great for slowing down the system in our circumstances. You can add it to water, stir, and drink it quickly as it starts to gel quickly. Just start with a teaspoon and evaluate where you go from there. You will find Metamucil's main ingredient is also psyllium husk. The plain husk powder tastes a little dreary, but it is dirt cheap and can be flavored, or give the Metamucil a shot; the latter has other ingredients. Take it when you want, just start slowly. Google "Metamucil and ileostomy." Feedback for others would be great too.

Do you monitor how active your pouch gets after your other meals? Since I don't have a colon, I am incontinent. I won't eat past 6:00 pm so that my food passes and my pouch is less active. Of course, if I eat something fatty then I will be up several times emptying. Sometimes it helps for me to eat a banana or applesauce to harden my loose stool and slow things down.

I find that the best way to avoid frequent night bag emptying is to eat early and limit fluid intake. I have to take 6 loperamide 4 times a day and 2 omeprazole a day. It does help but I do empty at least twice a night. It's really affected my energy levels and sleep patterns, but I guess the less you put in, the less active it should be.

All very good comments.

Very accurate.

My guess is a bit off the wall.

I empty once or twice a night.

Eating light by six does help.

Bananas and marshmallows as a snack.

But I have thought, why is the stoma more active at night? Does being prone for several hours influence the stoma output? Laying down?

Wondering, with all the great advice given, if a recliner chair might solve the issue too?

Anyone try it or give that a chance?