Ileostomy reversal coming up - what will be my new normal?

Posted by iamthekat @iamthekat, Apr 25, 2020

Hello all. I was diagnosed with stage 2 colorectal cancer 12/18/19 and had surgery 2/13/20. All cancer was removed. Yay! Left me with an ileostomy.

Now that I am cleared to have it reversed, I’m don’t know what to expect once it’s done. Most of my rectum was removed.

I hear stories of massive diarrhea to constipation. Am I going to be in diapers? Will I able to lead somewhat of a normal bathroom life?

I do not want to keep my ileostomy at all.

Thank you,

Jennifer

Interested in more discussions like this? Go to the Colorectal Cancer Support Group.

@cutie1

Thanks for sharing now I have an ideal of what to expect after my surgery, I had ostomy 5 yrs and wondering what new norm will be like

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@cutie1
I have a much more detailed post to another member here last week.
What to expect after the reversal, foods that help the transition, and a few tips that may help.
https://connect.mayoclinic.org/comment/959509/

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@terrihodges

Hey @cjay it’s Saturday and I’m up and around and eating rather bland stuff. My abdomen sounds like backed up plumbing, but no BM yet. My surgeon recommended coffee to get me going 🤪 and I thought of you. Perhaps, in this instance, I should give it a try so they’ll let me go home! 😊👍

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@terrihodges
How are you feeling? Are you home from the hospital?
Sending lots of good juju!

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@cjay

We’re all about the same age. I’m 65 and vegan for 9 years. But after my cancer diagnosis and surgeries I’ve been eating eggs, fish and chicken. As long as I take 1 loperamide (Imodium) in the morning and 1 tsp. Metamucil after I eat (in just enough water to dissolve) I’ve been doing really good. Regular bm’s, and I’m back to yoga and biking and hiking.
The advice from this group has been extremely helpful throughout my journey😘

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Thanks for sharing now I have an ideal of what to expect after my surgery, I had ostomy 5 yrs and wondering what new norm will be like

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We’re all about the same age. I’m 65 and vegan for 9 years. But after my cancer diagnosis and surgeries I’ve been eating eggs, fish and chicken. As long as I take 1 loperamide (Imodium) in the morning and 1 tsp. Metamucil after I eat (in just enough water to dissolve) I’ve been doing really good. Regular bm’s, and I’m back to yoga and biking and hiking.
The advice from this group has been extremely helpful throughout my journey😘

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I too was diagnosed with stage 2 Colon cancer in July 2022 at the age of 70. All cancer removed and no chemo. Reversal was done September 2022. Other than more normal bowel movements every day, everything else has been pretty much “before surgery normal” for me. I Think diet has played a large part in my new normal (which is pretty much the same as my old normal). I do the Mediterranean diet, leaning more towards vegan. Fish, chicken, Vegetables, fresh fruit, foods with good fiber content. I rarely eat red meat, no highly processed foods and no dairy.

Diet, exercise and good mental attitude were the keys for me. Diet and exercise are the easy parts, the mental attitude sometimes requires work.

Best wishes. I’m sure everything will work out fine for you.

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@terrihodges

Hey @cjay it’s Saturday and I’m up and around and eating rather bland stuff. My abdomen sounds like backed up plumbing, but no BM yet. My surgeon recommended coffee to get me going 🤪 and I thought of you. Perhaps, in this instance, I should give it a try so they’ll let me go home! 😊👍

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Hey @terrihodges I’ve been thinking about you! You sound good- and go ahead and have that coffee. At least it will get you home😉 A salad would probably also do it! Walk as much as you can, it gets everything moving! I did laps around my floor!
I spent 2 nights and went home my 3rd day.

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@terrihodges

Hey @cjay it’s Saturday and I’m up and around and eating rather bland stuff. My abdomen sounds like backed up plumbing, but no BM yet. My surgeon recommended coffee to get me going 🤪 and I thought of you. Perhaps, in this instance, I should give it a try so they’ll let me go home! 😊👍

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Hi Terri, When I was in post-op reversal they gave me a Dulcolax suppository after waiting 3 days for something to start working. Good luck!

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@cjay

Haha - we need to come up with a better name than diapers!
I’ll be thinking of you on Thursday. I know it will go so smooth!
I forgot to mention one other thing- don’t drink hot coffee! I still haven’t had any since the day it caused so much grief - and I really miss it.
You’re going to do great 👍😘

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Hey @cjay it’s Saturday and I’m up and around and eating rather bland stuff. My abdomen sounds like backed up plumbing, but no BM yet. My surgeon recommended coffee to get me going 🤪 and I thought of you. Perhaps, in this instance, I should give it a try so they’ll let me go home! 😊👍

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@printz1

Thank you for your answer. My surgeon in Rockford said no to doing it because of all the diarrhea I would have. I'd like to get a 2nd opinion somewhere. Do you think that would be a good idea or should I just stay with this darn bag?

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Well, I’m 2 days post-reversal and still no BM, but eating and walking and my abdomen is gurgling like backed up plumbing 🤞 Only time will tell, but I’m happy I’m trying to get rid of that bag. I had it for 18 months due to 6 months of chemo and then non-urgent surgery delays post-COVID. We’re all different. Definitely get more qualified advice and do what feels best to you.
I’m 65, fairly fit and active, and not quite ready to give in to life with a bag, if I have a choice. My thoughts are with you. Good luck 🤞 feel free to contact me again in a bit and I’ll let you know how things progressed xo

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@kadet

I am waiting for my surgeon to set a date for the procedure. He said he will be removing the entire colon and connecting the sm intestine to my sygmoid colon, which is 2.5” after a previous surgery in 2019, when I had a redundant colon and 13” of my lg colon was removed. I’d like to hear the pros and cons of this procedure. I understand everyone is different with their post op. After a month or so do the bowel movements per day slow down? With the ileostomy I empty the bag 7 times daily as I don’t like it full and heavy. I have heard great things and I’ve heard of diarrhea, and needing to run for the bathroom vs someone who said he goes in the am and in the pm. That would be a blessing. What are people finding post surgery and 3 months later etc. will it get better with time?

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Hi @kadet, I moved your post asking great questions about what to expect after an ileostomy reversal to this existing discussion that @cjay started a couple of months back:
- Having my ileostomy reversed: What will be my new normal
https://connect.mayoclinic.org/discussion/having-my-ileostomy-reversed-monday-and-i-have-a-few-questions/
.
I did this so you can connect with other ostomates like @iamthekat @catherine1290 @terrihodges @d1ane @samuelg1950 @cspain123 and @cjay. Some had their reversal done years ago, others like Cjay a few weeks ago and Terri only days ago.

Here's another related discussion with useful tips:
- Ileostomy reversal coming up - what will be my new normal?
https://connect.mayoclinic.org/discussion/ileostomy-reversal-coming-up-what-will-be-my-new-normal/

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