What Defines a High Output Ileostomy? Seeking Clarification

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343
Mysterious Mose
Feb 23, 2024 4:42 pm

I have been a member of this site for about 10 months now. As many of you know, I have an ileostomy sans colon. I keep hearing the term "high output ileostomy" being tossed around. I have come to the realization that I really do not know what that means. Is there such a thing as a low output ileostomy? If so, what defines these? If I do not consciously either eat a lot of potatoes (for instance) or take any inhibitor such as loperamide (Imodium) or omeprazole (Prilosec), I empty my bag 9-11 times a day, with 2 of those in the wee hours. Is that considered a high output ileostomy? Or are high output folks doing more than every couple of hours? I've kinda been assuming that the very definition of "high output" is ileostomy.

Daniel

JVM261
Feb 23, 2024 5:32 pm

I really appreciate this post. I was wondering the same thing.

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TerryLT
Feb 23, 2024 10:22 pm

Hi Daniel, I've always interpreted this as someone with an ileo who has very liquid output, so the increased fluid increases the volume of output. Maybe I'm wrong though, interested to hear what others have to say. My only other thought is that it just refers to someone who eats a lot, i.e., what goes in must come out!

Terry

w30bob
Feb 24, 2024 12:34 am

Hi D,

Technically, it means when you have more than a specific amount of output per day. That magic number varies between 1.2 and 2.0 liters, depending on your source. High output ostomies are primarily liquid output, hence the measure in liters. I tend to look at it more as how many times you have to empty your bag in a day, since no one actually measures their output unless directed to do so by their doc. The range for that is from as low as 1 time per day for colostomates who irrigate to 30 to 40 times a day for short-gutted folks. Where's the cutoff? Not sure, but if you empty your bag when it's about 1/3 full (200ml), those numbers would correlate to between 6 and 10 emptyings per day. More than that and you are in high output territory, my friend. So just snatch your wife's measuring cup and keep it next to the throne and start measuring. Just make sure you tell her you're buying her a new measuring cup if she catches you... and don't ask her to bake anything until you're done.

;O)

Hisbiscus
Feb 24, 2024 12:57 am

I'm assuming that it means output that would overfill a regular ostomy bag. They do have those high output ostomy bags, and they are long and huge. A nurse gave me one at the hospital along with a bunch of Sensura Mios to go home with until I could get my supplies ordered. Anyhow, I was a newbie and having a hard time changing my bag alone. The only one I could manage to get on was that high output, and I actually went to the emergency room with that thing on, telling them I needed help getting a bag on. They really got a kick out of that. When the ostomy nurse came down, she laughed so hard at the high output bag. I'm glad I could give them all a good laugh. I think certain conditions can cause it along with illness and diarrhea. My output was high with diarrhea when I had ileus after my proctocolectomy.

 
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Ben38
Feb 24, 2024 8:07 am

I used to have a jejunostomy. There, the highest output of all stomas, I would have to empty at least once every hour, and it was quite normal for the bag to be full by the time I had done the Velcro closure back up again. I used to spend most of my life in the toilet, so 30+ times a day emptying, and that was with taking various meds and injections to slow it down. To me, I think if you're emptying your bag over 10 times a day, you're getting on to high output. I see from some groups I'm in, people often mistake loose output for high output. They're both two very different things in my view.

Hisbiscus
Feb 24, 2024 11:02 am
Reply to Ben38

Wow, that sounds really horrible to go through.

Justbreathe
Feb 24, 2024 1:28 pm
Reply to w30bob

LOL 😆 although disgusting thought… JB

warrior
Feb 24, 2024 2:43 pm

It is confusing the concept or definition of high output.

And I think we are splitting hairs trying to grasp a proper definition.

Are we talking volume or mass? Compared to the number of times we empty?

It's like comparing atypical to typical terms.

I believe ileos are normally high-output fluid makers. This is considered typical - the norm for us. Well, let me rephrase. I am one, and I don't think I am wrong saying that most ileos are typical high output.

So when I see and read "I have high output ileo," I say "No shit!" There is no news flash here. I have never seen a post saying "I have low output." This would be atypical in my book, unheard of, dig?

I have high output (volume) liquid waste in the mornings only, but by eating marshmallows and bananas during the day,

it's controlled.

I honestly believe ileos are typically high-output makers. How we can slow it down or thicken it has been discussed greatly in other threads.

So Daniel's last line in his post? Totally agree! Ileo equates to high output. Boom!

Mysterious Mose
Feb 24, 2024 3:37 pm
Reply to w30bob

Thanks, Bob. I'll give a gander at actual amounts. I already have measuring devices in my kit. I wouldn't need to dip into our kitchen utensils. But, I do have to ask, why would they have to belong to my wife? That seems a little 1950-ish. Besides, my wife is a double-E and baking is not her thing. :-)

Daniel

Mysterious Mose
Feb 24, 2024 3:44 pm
Reply to Ben38

Thanks, Ben. Emptying every hour would definitely put a pin in high output. I thought every couple of hours was a lot. Shows you how much I know! With Imodium, I can get it down to 5-6 by taking 2mg with breakfast. I also tried taking an additional 2mg in the evening, but that ended up with me running an IHOP on my gut. Pancakes everywhere. I recently read a post here where someone said they were taking 40mg of loperamide a day. I couldn't imagine. In fact, that was what triggered my question.

Daniel

Ben38
Feb 24, 2024 8:05 pm
Reply to Mysterious Mose

We never stop learning. I had my ileostomy for about 10 years before I had my temporary jejunostomy. I didn't think anything could surprise me by then, but that did. Even nurses in the hospital would come two at a time to change the bag when I couldn't do it myself.

You can take a lot more Imodium/Loperamide than it says in the instructions, but only with a doctor's advice and other meds with it too, so as one is starting to wear off, the other starts kicking in. I used to have an injection every 10 days to slow output down as well. I could feel the benefit from it. It was a long time ago, so I've forgotten the name of it.

Ben38
Feb 24, 2024 8:24 pm
Reply to warrior

The first 10 years of having an ileostomy, a normal day, I would only need to empty it 2 times a day, and it was always very solid. Never having a colostomy myself, I can only guess it was of similar output to one. Since having a large piece of my small bowel removed, I empty around 10-15 times a day. I still don't consider that as high output myself. I don't even take meds to try and slow it. Dehydration has never been a problem in the last 20 years from it. Output from ileostomies varies widely. They say emptying 7-9 times a day is average output, but there is often less than that. I think it's more just a shock to people in the early days from going maybe once a day the old way to needing to empty their bag a few more times than that until they learn to live with it and accept the new normal.

w30bob
Feb 25, 2024 8:53 am
Reply to warrior

What's shakin', bro? Well, the definition is needed to classify folks, as diet, medications, insurance coverages, etc., can all depend on it. We're talking volume, since high-output ostomates have primarily liquid output, but when my docs ask me how much output I have in a day, I reply by saying, "Doesn't it depend on how much I eat and drink that day?" So you can game the system if need be, but I get that the medical world needs to classify people, as it makes their life easier when dealing with the insurance companies and allows other medical staff to instantly know your condition by simply reading it on your record.

Not all ileos are high output. It depends on three things: how the colon was disconnected (i.e., with the ileocecal valve or without), if your terminal ileum was removed or not, and how much of your small bowel, if any, was removed. The more of those things removed, the higher your output will be. Your ability to hydrate also plays into this, but we've covered that a million times. Over the years, there have been a lot of ileostomates on here that said they only had to empty a couple of times a day. I know because I was always amazed to hear that. So while I'd imagine most of the ileostomates on here would probably be high output, they're not all. Lucky bastards!

;O)

IGGIE
Feb 25, 2024 3:01 pm

I average 6 to 7 a day, but the odd time up to 11. I don't like taking anything to slow it down; I just let it do its own thing. I take enough medication for other things, so no more. Regards, IGGIE

Tommy123
Feb 26, 2024 2:01 am

Hi, I'm in the UK. I have been told I have what they call a high output. I have a double-barrel ileostomy in my jejunum. I was told normal output is emptying about 3 to 4 times a day; anything over 5/6 is high output. If I don't take my loperamide, then I'm going to the toilet every couple of hours. I have to take 20 mg before each meal, and that brings me down to 3 times a day. I don't know how long it's safe to take 60 mg of loperamide a day, though?