Hi all, I had a stoma reversal in August this year, and it's been really hard to get back to normal. My bowel is all over the place. I have all the symptoms: urgency, swinging between diarrhea or constipation, none of which appears to be triggered by food. Now I've got what I thought was piles, and I'm now panicking that perhaps it's the cancer returned. Does anyone else have a similar journey or thoughts on the reversal operation?
Hev
Nov 11, 2022 9:13 am
Morning glory
Nov 11, 2022 7:23 pm
Sorry, I don't have an answer for you, however, I wish you the best. I would certainly address this with my surgeon. I wouldn't want that cloud hanging around.
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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
w30bob
Nov 12, 2022 2:31 am
Hi Hev,
Sounds like you need to have a discussion with your Gastro about your condition. Get a copy of your surgical reports from your surgeons and hang onto them... you'll be glad you did in the future. You need to determine which parts of your bowel were removed, and then discuss this with your Gastro to find out what to expect with your newly modified bowels. See if they saved your ileocecal valve... or if it was removed. Whenever bowel is removed, things rarely go back to 'normal' when reconnected. You just have to figure out what your new 'normal' is. Once you know what's now missing, you can determine what those parts of your bowel used to do (and now cannot), and then adjust your diet accordingly. It seems awfully quick for your cancer to return, but that should be something they could check easily enough. Don't waste your time trying to figure it out on here... get to your Gastro ASAP and figure out what's going on!
;O)
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