Connect
Anyone with high-output with ileostomy? What helps reduce output?
My husband had emergency colon surgery on November 26, 2025, and woke up with an ileostomy. For the first few months, his output averaged around 800 mL per day. Around March, however, it began increasing significantly. It became so severe that his sodium level dropped to 117, resulting in multiple hospitalizations.
On May 9, I took him back to the hospital where he had his original surgery. They scheduled an ileostomy reversal for May 20. The surgery initially appeared to be successful, but eight days later, his bowel perforated again. He had to undergo another emergency surgery, and now even more of his intestines have been removed.
Since then, his ileostomy output has consistently been around 1,500 mL per day and has reached as much as 2.6 liters in a single day.
We are doing everything we've been told to try:
6–8 small meals each day
Octreotide every 6 hours
4 Lomotil every 6 hours
3 loperamide every 6 hours
2 packets of Metamucil three times a day
Unfortunately, he cannot tolerate codeine.
Has anyone experienced a high-output ileostomy like this or found anything else that helped reduce the output? We are working closely with his doctors, but we're feeling desperate and hoping someone may have additional suggestions or experiences to share. I just want to help my husband.
Like
Helpful
HugInterested in more discussions like this? Go to the Ostomy & J-Pouch Support Group.
Connect
https://www.mkuh.nhs.uk/patient-information-leaflet/high-output-stoma-diet-sheet
@jadarose05 welcome to Connect and I'm so sorry to hear your husband is having so much trouble.
I have had high output with my ileostomy, but I don't think it was anything as high as your husband's. Mostly I have high output with food bourn illness these days.
What types of food is he eating? I know he's already taking metamucil but other soluble fibers helped me, especially in the beginning. These are "thickening" foods like bananas, pastas, applesauce, peanut butter, and breads. I also stay away from fruit juices, and drink Gatorade diluted to about 1/3 strength (full strength Gatorade is much too sugary). Are you keeping a food diary?
Is he lactose intolerant? Is he eating anything with artificial sweetener in it? I'm guessing not but sucralose will give me a very high output.
I personally don't find that small meals help, I typically will eat three meals a day. For me, when I eat my gut gets active and I have more output. If I eat more often, it's more active.
Has your medical team considered giving him TPN and letting his gut rest for while? I'm not sure what caused his emergency surgery, but does he have bowel disease?
I had mine in Feb and have not had this experience. I take a pre/probiotic. I am so sorry he is having these issue. Praying for relief.
@susanf8
I am from the UK and therefore unfamiliar with the medicines prescribed for your husband except Loperamide so I cannot talk about the efficacy of his medication. I have a high output stoma. All liquids zoom straight through my small intestines, especially coffee. The output to the stoma is of course directly related to the amount eaten and drunk. In addition, the type of food eaten also has a big impact. In my experience and research, high fiber foods which are healthy for "normal" digestive systems can wreak havoc for some one with a stoma. For example, leafy greens including salad are a no go for me. Not only are they indigestible in the small intestine, there is absolutely no nutritional benefit derived. According to advice I have received, it costs more energy to process leafy greens for ostomates than the nutrition provided. To derive the benefits of leafy greens, look into broccoli sprout supplement providing sulforaphane. In my experience several smaller meals do make sense and loperimide alone (just one tablet a day in my case prescribed while in hospital did actually help and prevent sodium loss) did help. Timing and combining are important. Avoid drinking large amounts of fluid in one go - this is difficult in practice I know - but once the fluid leaves the stomach then it is full speed to the stoma. There is nothing to stop it just flowing through. Also, there are natural thickeners such as banana and bread. These definitely slow down transit but obviously do not eliminate waste eventually. I also suggest your husband gets his kidney function checked out as well. All the very best.
Sorry. Should have replied to you directly, not Susan. See my reply below.
@jon32123 to reply to the original post, you can tag the poster, like this: @jadarose05
If you reply to a comment, it gets tagged automatically.
Did you consult a urologist? Not a general urologist: a surgeon urologist?
@jaxfl I'm not sure why a urologist would help, can you clarify? The original poster has an ileostomy and is having high output of stool.
Thank you. I missed that. I apologize for the error. Please remove my reply to avoid future confusion.
I have the same thing. I use to be in Gattex, have you heard of this?