So in Oct 2015, I had pancreatitis, a burst bowel, and had a colostomy placed. I also had my sigmoid colon removed at the same time and was diagnosed with chronic leukemia. In Feb 2016, I had a resect. In 2018, a massive hernia was fixed. In March 2024, my husband and I had no clue why (even though the report says we were spoken to extensively and given info - all bull SH-t), and I suddenly had emergency surgery for a blocked bowel and had an ileostomy placed with no chance of reversal in March 2024. I had also been diagnosed with acute myeloid leukemia in Jan 2024, and TPLL, another acute but rare leukemia, to which I had such a violent reaction to the chemo that I literally almost died!! I had sepsis, septic shock, bacteremia, etc. This surgery was performed after the violent reaction to the chemo. I complained of pain for weeks, and they finally took a scan and found two major infections. I have had trouble with my ostomy since it was placed. What do you think of the colostomy and sigmoid colon removal as a reason why I am having so many issues now?
I wish I had some input here, but I can't offer any experience. However, I do hope you find someone who can help, and my heart goes out to you for what you've gone through.
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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
Hello,
I had my sigmoid colon removed and was gifted with a colonoscopy. I have stage 4 thyroid cancer, prostate cancer, and skin cancer.
I've had no issues with the colostomy; it works very well. I do have issues with rectal stump inflammation. But rectal stumps usually are troublemakers.
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I'm sorry you are having such a tough time.
I don't think your stomas, either past or present, are the source of your issues. I am surviving rectal cancer that invaded every organ in my pelvis. They had to empty out my pelvis to get rid of the cancer. I had also previously had a very rare NET of the pancreas.
I know. When this kind of stuff happens, we look for reasons. We blame whatever was different or whatever we think we did wrong. The truth is that cancer happens. We don't have control over it, and it isn't logical. None of what's happening is your fault, and it's not the result of any of the medical interventions you've had.
You've been given a very difficult set of circumstances. I feel for you.
How to Get Back to Activity after Ostomy Surgery with Kimberly | Hollister
I had no issues with my colostomy either. It's the ostomy that's a nightmare! I have to empty it every time I pee, and it's probably 8-10 times a day minimum. Just this morning, the ostomy bag was leaking. I never leak, but overnight I did twice. I was up really early changing the whole thing. I think missing the sigmoid colon is disrupting my ability to process most food. I feel sick before I eat. I feel sick after I eat. And no doctor will see me! It's truly amazing. They are clueless and are not interested in anything out of the ordinary. I just want to curl up in my chair and sleep. Ever since I started walking a block or so, I've felt worse. I feel like something "moved" inside that is disrupting my situation. I hope the specialist I'm seeing next week will put me in for a scan right there so he can see what's happening; otherwise, it's a worthless visit.