Hi. I have an ileostomy and my output has always been high. Right now, the ostomy nurse is having me use Imodium three times a day. Has anyone experienced this, and what tips do you have?
corlsharonl49
Jan 05, 2025 8:05 pm
Past Member
Jan 05, 2025 8:32 pm
I am sure you have, and I don't want to assume you haven't tried different foods. In case some foods: mashed potatoes, bananas, bread, bagels, applesauce, pudding, peanut butter.
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Posted by: Karen & Stella
Fay,
I am one of those few people who still have a lot of output at night. However, I suffer from short gut syndrome after seven bowel surgeries that led to the loss of much of my small intestine as well as my large intestine from the initial bowel cancer surgery. It does get better over time as your system adjusts, but an ileostomy can be a challenging adjustment. It's important to connect with a good Enterostomal Nurse - ET nurses who can help you problem-solve over time. It's been five years since my initial surgery, and I had a great visit with a new ET nurse in December. He really helped me with the problem of high output at night. I had been getting up every 90-120 minutes to empty my high output bag because of filling. If I slept for three hours without emptying, I would have problems. My ET nurse helped my husband and me make a nighttime collection system using a Rubbermaid juice container with a handle and my old CPAP hose. This is connected to one of my two-piece high output bags and allows for continual drainage. It isn't pretty, but it has been a real lifesaver. I guess the real message I want to share is to stick with it, find a nurse who you can work with, and together you will find solutions to whatever challenges you face. This website is also an important support for me and others. There is nothing you will go through that others haven't already faced and figured out. There is so much wisdom here. Read the materials they've put together for newbies. There are a lot of great suggestions to use. I hope things get better quickly for you.
Karen
I am one of those few people who still have a lot of output at night. However, I suffer from short gut syndrome after seven bowel surgeries that led to the loss of much of my small intestine as well as my large intestine from the initial bowel cancer surgery. It does get better over time as your system adjusts, but an ileostomy can be a challenging adjustment. It's important to connect with a good Enterostomal Nurse - ET nurses who can help you problem-solve over time. It's been five years since my initial surgery, and I had a great visit with a new ET nurse in December. He really helped me with the problem of high output at night. I had been getting up every 90-120 minutes to empty my high output bag because of filling. If I slept for three hours without emptying, I would have problems. My ET nurse helped my husband and me make a nighttime collection system using a Rubbermaid juice container with a handle and my old CPAP hose. This is connected to one of my two-piece high output bags and allows for continual drainage. It isn't pretty, but it has been a real lifesaver. I guess the real message I want to share is to stick with it, find a nurse who you can work with, and together you will find solutions to whatever challenges you face. This website is also an important support for me and others. There is nothing you will go through that others haven't already faced and figured out. There is so much wisdom here. Read the materials they've put together for newbies. There are a lot of great suggestions to use. I hope things get better quickly for you.
Karen
Morning glory
Jan 05, 2025 8:35 pm
The Imodium is good, also the foods that thicken your output such as Beth mentioned.
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warrior
Jan 05, 2025 11:25 pm
Oatmeal Raisin cookies will help.
I found Metamucil gummy bears help slow mine down... gotta have the gummy! 👍
All week it's been an improvement. It takes time though... trial and error.
corlsharonl49
Jan 06, 2025 12:30 am
Some help and it's still trial and error. Just wish I could figure out the right ratio. I've heard marshmallows too, but I don't see much success there.
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warrior
Jan 06, 2025 12:40 am
Oh ye of little faith... don't expect any slowdown too quickly with advice. Your body has been through hell and is adjusting slowly too.
Patience, luv... Rome wasn't built... well, you know this part... 🤭
Anne_Shirley
Jan 06, 2025 4:50 pm
I have the same issue. I have a very high output ileostomy. I got mine 11/18, so it’s fairly new.
I have to take psyllium husk to thicken my stool, as well as applesauce, potatoes, carrots, rice.
If I’m not eating enough, my output goes insane. Nothing but liquid and pouring out. But as soon as I eat something substantial, it slows down.
I can’t take Imodium bc it makes me very….loose lol the opposite of its intended use.
Do you ever get dizzy/faint? I do. I’ve passed out quite a bit since the surgery. And that’s bc of how much I produce ☹️
Try eating a small amount of some stool thickening foods every 2-3 hours, no liquids when you’re eating. Wait about 20 minutes after you finish to drink any liquid.
Avoid chocolates and anything that can liquify the output.
Im sorry you’re dealing with this, but here we are, 2 peas in a pod 🫛
Good luck and please send a message if you hear of anything that may work that I didn’t mention. 😊