I have had an ileostomy for 7 weeks now. The other day I had a gastrografin enema to check my colon before reversal. The enema did not find anything. For about a week now, I have been leaking (assuming urine) and wearing pads. When I wipe after peeing, it's always discolored and smells bad. For a while, the smell was definitely a poop smell. There is still a smell, just not as strong. There is also discoloration in my pad. I told the surgeon, and she seems to think it's probably just a bad UTI. I am so scared and nervous all the time. I see the surgeon next week to talk about reversal.
Nervous
Jul 27, 2025 3:18 pm
AO166
Jul 27, 2025 3:28 pm
Do you have pain? Or did you have pain before this happened? I've had many fistulas; usually, I get pain, inflammation, and abscesses. Then the abscess opens, and the fistula starts leaking. It never just appears and starts leaking.
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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
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CrappyColon
Jul 27, 2025 3:58 pm
If your doctor thought it was a bad UTI, did they prescribe an antibiotic?
SusanT
Jul 27, 2025 6:53 pm
It could be a fistula. But that isn't the only explanation. Actually, although I am not sure, I'd have thought they'd see some irregularities with your test if there was a fistula.
When you see the doctor, get treatment for the suspected UTI. I suspect this will resolve your issue.
Meanwhile, pay careful attention to where the liquid is coming from. A fistula goes both ways so you'd expect a fistula between the rectum and the bladder to cause urine to leak from the anus. In fact, when I had such a fistula, it started as urine in my stool and only later progressed to stool in my urine.
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