Managing High Output Variability with an Ileostomy

Replies
23
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322
Isla is my sunshine
Jun 25, 2024 2:01 am

I have had an ileostomy for nine months. I have always had high output, and some days it is almost all watery, and other days more mixed viscosity. Sometimes my stoma just shoots out water, and other times it is normal, then turns pasty, and then watery all within fifteen minutes.

Does anyone else have this problem?

AlexT
Jun 25, 2024 3:26 am

No, thank God.

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regginadawnwalter
Jun 25, 2024 6:44 am

I have a diverting ostomy and mine is always "spitting" and almost all watery. The most relief I get is if I eat a lot of noodles and celery, but then I bloat so badly it hurts. I've talked to my doctor, and he suggested fiber pills, but that hasn't helped as of yet. My bag fills so often I feel as if I live in the bathroom.

Justbreathe
Jun 25, 2024 10:34 am

Ileostomy here... In my own experience, output consistency is totally dependent on input (what I eat), and so for the last 4 years (my life with an ostomy), I have learned that bread, potatoes, bananas, Cheerios, potato chips, etc., seem to thicken output. You are new on this journey, and if you pay close attention to this, you will come to understand your ostomy body. This is one reason I like a clear pouch to view output. The biggest helper for me was originally mentioned by my surgeon. He advised me to take a daily dose of fiber such as Metamucil. I did not follow his advice as I do not like to take any type of medication on a daily basis, and I considered Metamucil a laxative. I have come to find out daily fiber powder is a godsend! I now take Psyllium Husk powder (same as Metamucil but less expensive) daily. This helped tremendously!
As all the long-term ostomates on this site will tell you - everyone is different, so you are pretty much on your own trial and error journey. This website has helped me through many rough times, and I hope it does the same for you. The best advice regarding your question - as I see it - is to pay very close attention to your input and output until you can and will discover your own best possible answers. jb

warrior
Jun 25, 2024 11:09 am
Reply to Justbreathe

For sure, I can't say it any better than that. Now, it's up to the readers to follow up on the advice. The solid advice given and take it from there.

Over time the spitting subsides and you get to know your schedule, bathroom schedule that is. And what foods help bulk you up.

There is no one answer to this question. Helpful answers, yes. But only you will know what works for you.

Believe it or not, eventually you will be sharing the same advice with others later on.

Good luck.

 
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warrior
Jun 25, 2024 11:17 am
Reply to regginadawnwalter

Your diet isn't helping.

Fiber can be had through common foods. There are a few lists on this site. I don't know about a pill form of fiber. Foods. Get it from foods and research and expand on them.

You really have to find out what works for you without consequences. Like that bloating? Ugh...

And... over time... you will find what works... just be patient...

Good luck.

Mysterious Mose
Jun 25, 2024 3:33 pm

Consistency and frequency can be (somewhat) controlled through diet. You can also try using loperamide (the active ingredient in Imodium). I eat a lot of fruit (bananas, strawberries, raspberries, blackberries, peaches, etc.) in a morning smoothie. And I use pea protein and psyllium fiber in the smoothie. I also take 2 mg of loperamide every day. The consistency of my output is that of oatmeal, and I empty my bag 5-7 times a day.

Over time, you will learn what works for you. Experimentation is the name of the game because, as JustBreathe said, we are all different. What works for me may not work for you and vice versa.

Daniel

Ben38
Jun 25, 2024 3:37 pm

No, I have loose output from having a large piece of my small bowel removed, but not high output.

What has your doctor or ostomy nurse said about it?

How many times a day are you emptying the bag?

Possibly diet-related or just unlucky and have high output. Are you taking any meds to slow it down and drinking plenty to replace the fluids you're losing so you don't dehydrate and end up with kidney damage in the future?

Axl
Jun 26, 2024 9:18 am

I don't think there is anything unusual here; mine is much the same. How much fluid you drink can have an impact too. Depending on what I have eaten, sometimes the fluid/watery output seems to find its way past the more bulky output which arrives later.

spope001
Jun 26, 2024 10:03 am

Hello... I also have an ileostomy with similar issues as you. Eating bananas, applesauce, oatmeal, and marshmallows does help. Have you tried this?

June Bug
Jun 26, 2024 3:50 pm
Reply to regginadawnwalter

Hello! I had a colonoscopy two months ago and... I can't lie, I live in the bathroom. I clean the darn pouch almost squirt clean. (My nurse told me not to do it) and it takes me well 45 minutes. Finally, I get out of the bathroom, but by the time I get to the living room, it's half full again. Sometimes that happens four times in a row!

I know how frustrating it is!

aTraveler
Jun 27, 2024 10:41 pm

Remember BART (bananas, applesauce, rice, toast). These are things useful for thickening your output. Try each; maybe one will work for you. Bananas are the gold standard for me.

w30bob
Jun 29, 2024 3:59 am

Hi Isla,

Let me see if I can unpack some of this for you. People with ileostomies are not all the same, just like all people with a certain type of cancer aren't the same. They could be Stage 1, Stage 2, Stage 3, or Stage 4 and all claim to have the same cancer. Having an ileostomy is like that, in that everyone with an ileo has a different amount of small bowel remaining. And the amount of bowel remaining is usually what determines your output frequency, all else being equal. The less bowel you have, the higher your output will be. And that's because there's less bowel to absorb what needs absorbing and less time to do that absorbing with the reduced surface area of your shortened small bowel. Every time you eat or drink something, your stomach evaluates what the fat content is of what you just put in it and determines how long it needs to stay in your stomach acid to be broken down properly before being dumped into your small bowel for absorption. Most liquids, with the exception of milk, contain little fat, so they get released into the small bowel almost immediately after they hit your stomach (because there's nothing to break down). With an ileo, you have no large bowel or colon attached, so there's nothing to absorb the majority of water when it reaches the end of your small bowel. So guess where that goes? Your liver and gallbladder make bile to help break down whatever's in your small bowel, since the stomach only breaks stuff down partially, and your small bowel only absorbs, not breaks stuff down. Your bile is reabsorbed at the very end of your small bowel in your terminal ileum. Many times when someone is given an ileostomy, the very end of the small bowel is often "involved" with whatever is causing the doctors to get your colon out of the game, so that terminal ileum that's needed to re-absorb all that bile from your liver and gallbladder is removed too. So guess where all that bile ends up?

That explains the 'liquidy' part of high output. The 'High' part is because in a normal person they have their full length of small bowel, which nature/God/whatever you believe, gave us to act as a 'buffer' so that we don't have to stop and poop every hour and get eaten by a Sabertooth Tiger or T-Rex. I know...man wasn't around when T-Rex was, but we can dream. So think of it this way...imagine a 15-foot garden hose lined with velvet...that's your small bowel. If you dump a cup of anything liquid in it, nothing will come out the other end, because the velvet will absorb it. But cut that 15-foot hose down to 5 feet and dump that same cup of water in it...and some will come out the other end. And if you dump a second cup of water in it before the first cup is fully absorbed...a lot will come out the other end. And since your small bowel doesn't absorb water (that's the colon's job), every time your stomach dumps anything liquid into your small bowel...it's flowing into a fully saturated garden hose of a bowel...so you know where it ends up. The same place as all that bile you can't recycle...in your bag. So the more small bowel you have, the longer your garden hose and the more you can put in one end before it comes out the other. That's why an ileostomate who's only missing 6 inches of his terminal ileum is very different from an ileostomate that lost 4 feet of their small bowel...but they're both "ileostomates".

So what's a girl to do! Well...it depends on how much small bowel you have left. As some have said, fiber can be your friend. But not for all ileostomates. And fiber comes in two flavors, soluble and insoluble. Insoluble needs to be avoided. We're talking about the things you're just not going to break down and digest...like seeds, fruit and veggie skins, corn, pennies, and dimes, etc. You can find a list of insoluble fiber online easily. Soluble fiber kind of turns to mush and absorbs water. So that sounds good, but remember the short garden hose. The more you put in...the more comes out the other end. And soluble fiber expands as it absorbs water, so those two tablespoons of Metamucil you just mixed up in some water will end up expanding and making more output than if you just drank the water by itself. And more output doesn't help the situation. So while soluble fiber absorbs water...which is a good thing...you're adding bulk (more output) when you use it. This is less of a big deal with the more small bowel you have. There are some on here with their full small bowel intact that claim to have pretty normal output...and that makes sense. Then there's people like me who are short-gutted, such that if I get careless and drink a lot on a hot day can end up emptying my bag 40 times in 24 hours.

Motility meds also were mentioned...and they help. Again the more bowel you have to control...the better they work. So the bottom line here is you first need to understand what small bowel length you're working with. If your surgeon was competent, it should be in their surgical report, which as a nurse I'm sure you know how to get. Then it's a balancing act of what to eat and when, combined with controlling your liquid intake. That's a whole other subject unto itself, but WHAT you drink is critical too, as the small bowel can be 'tricked' to absorb water if what you drink is the right combination of water, sodium, and glucose. But if you drink the wrong combination, your small bowel will try to make it right by pulling what's missing from your body to try to make that liquid right...and drain you of valuable sodium, glucose, or water in the process. So it's complicated, but not really. Experiment and see what works for you, and if you understand the process that I just described (in a very truncated fashion)...it will all start to make sense. And once it makes sense, you stop being a bystander just watching stuff happen...you begin being in control of what happens. And that's a very good position to be in.

;O)

PS...And just when you think you have it all figured out, you'll realize you've overlooked the fact that your remaining small bowel continues to adapt to try to compensate for what was removed. And this goes on indefinitely...but it's a good thing, as it's trying to normalize a very abnormal situation. But just something to consider as time goes on.

Justbreathe
Jun 29, 2024 12:47 pm
Reply to w30bob

OMG, w30bob...

You are definitely a leader in this think-tank of many flailing ostomates and very helpful to me in keeping my head above water! I have copied this post for printing for further review as time and quietude allow. Thanks for taking the time to write this - it was extremely helpful! jb

Emad
Jun 30, 2024 1:14 am
Reply to Mysterious Mose

Imodium is really bad for ostomates. It works by paralyzing the intestines, which can cause a blockage. I used it one time before my surgery and almost ended up in the ER. Afterward, my sister had a friend who did end up in the ER from it. It was one of the first things I was told never to take after surgery.

IGGIE
Jun 30, 2024 12:25 pm
Reply to June Bug

G-Day June Bug, why the hell are you trying to clean your bag so much? Forty-five minutes is compulsive disorder. When they make a stoma, they pull the intestine out through a hole and then turn the top over like a turtleneck jumper, so what you're looking at is the inside wall of your stoma, which spends its whole life covered in shit. So why are you trying to get it so clean? All you have to do is empty the poop out and then put in about 150 or 200 ml of water and swish it around, then let it out. Now wipe the opening well with a tissue and close the bag. Five minutes max, and then get out of the bathroom and start living life to the full. Regards, IGGIE

leslielklinzing
Jun 30, 2024 6:27 pm

I have had an ileostomy since 2010. My bag fills with a watery liquid and air. It blows up so fast. I have to wear jeans that are a size too big and wear shirts that cover it. My coworkers look at me and I am so embarrassed. I am constantly having to go to the bathroom. I don't know what I can do to stop it from blowing up so big and fast. My bag is on my lower right side just above my hip. I don't wear a belt; I just wear underwear that is high enough to hold it. How do I stop it from blowing up with so much air so quickly?

Ostobychoice
Jul 04, 2024 3:07 am
Reply to w30bob

Wow! Very informative. Thank you for taking the time to explain all that in layman's terms.

w30bob
Jul 04, 2024 5:13 am
Reply to leslielklinzing

Hi Leslie,

Everyone is different when it comes to gas formation, so the best advice I can give you is to keep track of what and when you eat in a food diary and correlate that with what your output is. Once you understand what's triggering the gas, you can eat accordingly. Timing is also important, so don't overlook keeping track of when you eat and how much time elapses between times when you eat. There are lots of discussions on here about gas and what to do about it, so give the search a whirl... or start a separate post on it so people can see it and reply.

;O)

Betsy
Jul 05, 2024 6:26 pm
Reply to regginadawnwalter

I'm only 5 weeks in with my ileostomy and I too have the same problem. It's 4 a.m. in the morning and I can't sleep because I am emptying my bag every hour. I am eating all the right foods and it's still happening. I'm going to have to put a heater in the bathroom as I too feel like I live in there, haha. It only happens in the early hours of the morning, so I sleep the day away.

msnaynay000
Jul 05, 2024 6:32 pm
Reply to regginadawnwalter

Hello, I am new to this forum and I am glad to be here. My ostomy was mostly water, but my doctor put me on a pill called Lamotil four times a day and Imodium four times a day; it has helped. It's not watery, but I still go a lot. I hope this helps. I have had my ileostomy since January.

w30bob
Jul 06, 2024 12:49 am
Reply to Betsy

Hi B,

Well, you're eating the 'right' foods for someone, but obviously not for you. That's why advice given here has to be taken with a big grain of salt. However well-intentioned folks are with their recommendations, they're not you. And as you can see firsthand, what works for some doesn't work for all. Everyone needs to take it upon themselves to figure out what works for them and what doesn't. Advice is really just someone's opinion, and you know what they say about opinions. As I told leslie, you're going to need to keep a food diary. Then change only one thing at a time and document what happens, and you'll have YOUR solution figured out in no time.

;O)

w30bob
Jul 06, 2024 12:54 am
Reply to msnaynay000

Hi Reg,

Those are the common motility meds most often prescribed for diarrhea. They work by slowing down the motion of the bowels, which gives them more time to absorb. Over time, your body should adapt a bit, and you should try to continually lower your dosage of both. They're typically well tolerated... unless you're one of those poor slobs who have the side effects manifest in them. And the side effects, while somewhat rare, are not pretty.

;O)

Jayne
Jul 12, 2024 3:21 am
Reply to w30bob

I came across your post - quite randomly, as I noticed it appearing in the top box of the site - a lucky encounter...

 

Thank you, Bob, for this explanation of the ileostomist tract - it's the most enlightening overview and expression of what actually happens [be it in truncated form] and how the small bowel works without the rest of the tract that I have read in over 40 years!

Cheers

 

It gives many of us something to work with while adjusting and updating our own management of what, when, and how we eat and drink - an appreciation rarely voiced and lacking in most dieticians, physicians, and surgeons.

 

Your own medical knowledge coupled with personal understanding allows an extrapolation too - so helping us to unpick the base knowledge upon which to build.

 

As an aside, Bob, I would appreciate an interchange regarding the deep vein feeding too - as my own experience of the same was many years ago - and it is the one thing I am unable to be positive toward should the need arise as an end resort. Hence the extrapolation mention here.

 

You are a most valued contributor - I reiterate thanks for your time in writing as you do - we are lucky to have your expertise within the Membership.

 

BW

 

Jayne