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.
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@grandj I am not sure who you are replying to. If you reply to a post it will automatically add the @ and the person's name so that they're notified that they have received a reply. Otherwise it's not easy to tell. If you reply to the thread as a whole, it does not add the @.
Just to clarify, you have a high output ileostomy, and Gattex helped? How long were you on Gattex, and if you're not on it now what happened to make it unnecessary?
@susanf8 I was on Gattex for over a year, I took myself off because it had terrible side effects. But everyone is different