What do health care workers mean by the "new normal" after ileostomy reversal?

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knitter
Jun 17, 2023 11:39 pm

I'm expecting a reversal after rectal tumor removal and a temporary ileostomy within a few months. I keep reading about the "new normal" when I question how I'll eat, drink, and go to the bathroom when I've healed. I'd like to think I can enjoy food again and not be tied to being near a bathroom all the time. Is that reasonable? I'm in good health otherwise and am used to being active.

CrappyColon
Jun 18, 2023 1:22 pm

Do you have any colon left?

I'm assuming by new normal they mean things feel a little different... Depending on how they reconnect you, you'll be using some new muscles and some muscles that have had a break since you've had your ileostomy. You'll ease back into foods depending on how your GI system is waking up after surgery. No popcorn is one thing that makes me sad, I tried it once; it caused bleeding, but I have no abdominal colon left. You'll figure out what foods work for you.
My reversal wasn't typical as far as the urgency you hear about so I can't speak to that. It's different but not foreign if that makes sense?

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knitter
Jun 18, 2023 1:37 pm
Reply to CrappyColon

Thank you for your response. I have all of my small and large intestine still. I just had a tumor removed from my rectum so I still have some of the rectum.

CrappyColon
Jun 19, 2023 3:02 pm
Reply to knitter

You 'just' had a tumor removed- you say that like no biggie.

Depending on how much rectum you have left will probably have things feeling a bit different, but you have the whole colon so you still have a lot of storage, so once your body adjusts (in my non-expert opinion) I don't think you'll struggle with urgency like someone without any colon left does. For frame of reference, the average colon is 5ft long. I have 8" of rectum left and that's it as far as storage goes. From what I've been told, 8" is good ‍

Has anyone talked about PT or other exercises to do to get those muscles ready to work again?

knitter
Jun 19, 2023 5:23 pm
Reply to CrappyColon

This was really helpful. No, no one has talked to me about exercises and I asked my surgeon recently. They told me it would be discussed when I see him next month. I wish I'd gotten more out of them!

Thanks for responding. I tend to get anxious if I don't have answers right away.
My daughter says, "Patience is a virtue." Ha! I feel fortunate when I compare myself to others who have had more extensive surgical procedures, and despite the ordeal of the past year, I consider myself lucky. My surgeon is a wonder and got all the cancer out. He was also one of the few who thought it was perfectly reasonable to proceed to a reversal so I wouldn't have to live with an ostomy pouch.

My daughter's first job out of college is at a physical therapy clinic, so I'm going to ask her if she can pick up any tips for me. Meanwhile, if you have any suggestions, please inform me when it's convenient for you. I really appreciate the feedback.

 

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gentlejohn
Jun 19, 2023 10:59 pm

If you have an anastomosis really low, commonly you have small, frequent stools for about 6 weeks, assuming there is no stricture of the anastomosis. The ileostomy is done to protect the anastomosis. If there is radiation therapy, things can be different.