1. < Colorectal Cancer

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

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cspain123 | @cspain123 | Mar 28, 2023
In reply to @samuelg1950 "I certainly wouldn't discredit anything that your surgeon has told you. However, it's your body and..." + (show)
@samuelg1950

I certainly wouldn't discredit anything that your surgeon has told you. However, it's your body and your life. I'd definitely get a second opinion. The freedom of not having to deal with the pouch is well worth it. What have you got to lose?

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I had a reconnect after a year from colon cancer. Because of my non existent colon I have had issues with diarrhea, however I would much rather have this than the bag. I am 6 years out, I do take octreotide shots daily to combat the stools, but it is more because of the lack of colon, gallbladder surgery and the many surgeries on my abdomen. You have to do what feels best to you but for me it was worth it.

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cjay | @cjay | Sep 23, 2023

<p>Diet: I have NO idea what to eat or what to expect after the reversal. Any tips or suggestions for immediately after and the coming weeks? Any supplements or additives that worked to gain regularity?<br />Donating ostomy supplies: I have a good amount of supplies never used - pouches, paste, powder, spray, sachets, belts, etc. Has anyone donated their leftover supplies? Any ideas where I may? (I’m afraid the hospital will just throw them out if I bring them with me.)<br />Thanks so much in advance. I’m nervous and excited at the same time. No idea what my new normal will be after 6 months!</p>

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13 replies
catherine1290 | @catherine1290 | Sep 24, 2023
In reply to @cjay "Diet: I have NO idea what to eat or what to expect after the reversal. Any..." + (show)
@cjay

<p>Diet: I have NO idea what to eat or what to expect after the reversal. Any tips or suggestions for immediately after and the coming weeks? Any supplements or additives that worked to gain regularity?<br />Donating ostomy supplies: I have a good amount of supplies never used - pouches, paste, powder, spray, sachets, belts, etc. Has anyone donated their leftover supplies? Any ideas where I may? (I’m afraid the hospital will just throw them out if I bring them with me.)<br />Thanks so much in advance. I’m nervous and excited at the same time. No idea what my new normal will be after 6 months!</p>

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I had my ileostomy reversed 2 years ago. I had a 7 day stay in the hospital while they waited for a first BM. Finally gave me Dulcolax suppository. Your first movements will be loose and urgent. When you go home be careful what you eat as your colon tends to revolt. Cheesesteak Hoagie with hot peppers was a poor choice on my part! You may have severe cramping at first. Go easy with frequent very small meals. Good luck! It's wonderful once it's over!

REPLY
1 reply
cromme50 | @cromme50 | Sep 24, 2023
In reply to @cjay "Diet: I have NO idea what to eat or what to expect after the reversal. Any..." + (show)
@cjay

<p>Diet: I have NO idea what to eat or what to expect after the reversal. Any tips or suggestions for immediately after and the coming weeks? Any supplements or additives that worked to gain regularity?<br />Donating ostomy supplies: I have a good amount of supplies never used - pouches, paste, powder, spray, sachets, belts, etc. Has anyone donated their leftover supplies? Any ideas where I may? (I’m afraid the hospital will just throw them out if I bring them with me.)<br />Thanks so much in advance. I’m nervous and excited at the same time. No idea what my new normal will be after 6 months!</p>

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You are right, Mayo cannot accept your extra supplies but here is a source that will welcome them and re-distribute.
https://phoenixostomy.org/
If you are not in Phoenix, give them a call and ask for their equivalent in your area.
Congratulations on your reversal!

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1 reply
fbt217 | @fbt217 | Sep 24, 2023
In reply to @cjay "Diet: I have NO idea what to eat or what to expect after the reversal. Any..." + (show)
@cjay

<p>Diet: I have NO idea what to eat or what to expect after the reversal. Any tips or suggestions for immediately after and the coming weeks? Any supplements or additives that worked to gain regularity?<br />Donating ostomy supplies: I have a good amount of supplies never used - pouches, paste, powder, spray, sachets, belts, etc. Has anyone donated their leftover supplies? Any ideas where I may? (I’m afraid the hospital will just throw them out if I bring them with me.)<br />Thanks so much in advance. I’m nervous and excited at the same time. No idea what my new normal will be after 6 months!</p>

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You can donate supplies to Friends of Ostomy Worldwide. They will send you a mailer to ship for free.
I have donated supplies to them several times in the past.

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2 replies
cjay | @cjay | Sep 24, 2023
In reply to @fbt217 "You can donate supplies to Friends of Ostomy Worldwide. They will send you a mailer to..." + (show)
@fbt217

You can donate supplies to Friends of Ostomy Worldwide. They will send you a mailer to ship for free.
I have donated supplies to them several times in the past.

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Thank you so much!!😘

REPLY
cjay | @cjay | Sep 24, 2023
In reply to @cromme50 "You are right, Mayo cannot accept your extra supplies but here is a source that will..." + (show)
@cromme50

You are right, Mayo cannot accept your extra supplies but here is a source that will welcome them and re-distribute.
https://phoenixostomy.org/
If you are not in Phoenix, give them a call and ask for their equivalent in your area.
Congratulations on your reversal!

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Not in a Phoenix, but I got a worldwide ostomy donation location from another poster. Thanks!

REPLY
cjay | @cjay | Sep 24, 2023
In reply to @catherine1290 "I had my ileostomy reversed 2 years ago. I had a 7 day stay in the..." + (show)
@catherine1290

I had my ileostomy reversed 2 years ago. I had a 7 day stay in the hospital while they waited for a first BM. Finally gave me Dulcolax suppository. Your first movements will be loose and urgent. When you go home be careful what you eat as your colon tends to revolt. Cheesesteak Hoagie with hot peppers was a poor choice on my part! You may have severe cramping at first. Go easy with frequent very small meals. Good luck! It's wonderful once it's over!

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😆@cheesesteak hoagie with hot peppers!
Thanks for the info. I plan to do what I did when I first got the pouch - eat small, slow and scared!😉

REPLY
1 reply
cromme50 | @cromme50 | Sep 24, 2023
In reply to @fbt217 "You can donate supplies to Friends of Ostomy Worldwide. They will send you a mailer to..." + (show)
@fbt217

You can donate supplies to Friends of Ostomy Worldwide. They will send you a mailer to ship for free.
I have donated supplies to them several times in the past.

Jump to this post

What good information! I wish there was a place to donate medications like tacrolimus and zortress too! I tried Mayo and I tried my pharmacy, they can't take it.

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hardingv | @hardingv | Sep 25, 2023
In reply to @cjay "Diet: I have NO idea what to eat or what to expect after the reversal. Any..." + (show)
@cjay

<p>Diet: I have NO idea what to eat or what to expect after the reversal. Any tips or suggestions for immediately after and the coming weeks? Any supplements or additives that worked to gain regularity?<br />Donating ostomy supplies: I have a good amount of supplies never used - pouches, paste, powder, spray, sachets, belts, etc. Has anyone donated their leftover supplies? Any ideas where I may? (I’m afraid the hospital will just throw them out if I bring them with me.)<br />Thanks so much in advance. I’m nervous and excited at the same time. No idea what my new normal will be after 6 months!</p>

Jump to this post

I agree that would be great to have some place to donate meds.

I have a couple of Rinvoq 15 mg bottles that I got shortly before my ileostomy. My pharmacist suggested posting on Facebook, but I don't want to handle this publicly. I am still waiting to hear back from the local township Senior Center since apprently sometimes they can help.

When my dog died, the regional emergency vet center accepted all of his unused meds, including seizure drugs such as Keppra, Zonisamide and even phenobarbital. Wish I could find something similar for my drugs.

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