I'm six months in, and my surgeon kept my rectal stump in case my ileo could be reversed. She quickly realized it couldn't be. My rectum leaks and has discharge, for which I need a pad. Has anyone started with a stump and then had their rectum closed?
Heidi B.
Nov 03, 2025 12:15 pm
eefyjig
Nov 03, 2025 1:07 pm
I started with a rectal stump with my temp ileo and then my j-pouch. I never had discharge but continued to have UC in the stump during my j-pouch years (cuffitis), and when it was removed, the stump was removed with it. Never looked back. When that pain is gone, it is such a relief.
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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
Ben38
Nov 03, 2025 1:23 pm
Yes, I was in so much pain and never-ending infections. The smell was horrendous. I'm not joking when I say you could smell me coming. The pain after surgery was nothing compared to the pain I was in before it.
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SusanT
Nov 03, 2025 1:24 pm
I was left with my rectal stump because removal wasn't necessary, and the doctor didn't want additional complications to an already complicated surgery. I am having problems with my rectal stump that may lead to removal. If it happens, it happens. I'm in a much better place physically to deal with the surgery.
warrior
Nov 03, 2025 3:07 pm
Yes. Your story was mine 2 years ago.
I had my colon removed in 2016. And for 7 years, I kept my rectum intact in hopes of reconnecting. Meds never solved the leakage until blood began to discharge frequently.
In 2023, I had Ken butt because Barbie was out of town living the life she thought she'd never have. 🥂 Shaking her booty instead of holding it.
It's best to have everything taken out at once, especially if you have I.B.D.
Avoiding Ostomy Bag Leaking | Managing Ostomy Leaks with LeeAnne Hayden
Yrsae67
Nov 03, 2025 4:53 pm
Maybe not quite the answer you're looking for, but my rectum was removed, leaving the sphincter in place. The Barbie and Ken butt isn't done very often in the Netherlands when it comes to UC. I found the surgery very manageable and a relief because the pain is now gone. If the sphincter remains, you'll occasionally lose a drop of fluid, but it's practically nothing. After the surgery, a nurse offered me a painkiller as a suppository. I thought that was absolutely ridiculous. But the doctor later told me that if everything has healed properly, it's still possible. The medication will then be absorbed by the mucous membrane. I'm definitely not going to try that.