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

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

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

SOther suggestions like Worldwide Friends of Ostomy sound great.

Thought I would also mention a conversation I had with a Byram rep about donating supplies. In addition to the typical places she said that to her surprise some of her customers donated to local hospitals (Apparently some smaller hospitals don't have any ostomy supplies, and their patients have to bring their own.)

REPLY
cjay | @cjay | 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

Thanks for that info!

REPLY
1 reply
catherine1290 | @catherine1290 | Sep 28, 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

How are you doing now 3 days post--op?

REPLY
cjay | @cjay | Sep 28, 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’m a mess! Yesterday I couldn’t get off the toilet to save my life. They let me start taking an anti- diarrhea med, and that helping a little. I did get to go home on the 3rd day, and that was a blessing. I know it will get better, but it’s definitely been a difficult transition.
I appreciate you checking in with me!😘

REPLY
1 reply
catherine1290 | @catherine1290 | Sep 29, 2023
In reply to @cjay "I’m a mess! Yesterday I couldn’t get off the toilet to save my life. They let..." + (show)
@cjay

I’m a mess! Yesterday I couldn’t get off the toilet to save my life. They let me start taking an anti- diarrhea med, and that helping a little. I did get to go home on the 3rd day, and that was a blessing. I know it will get better, but it’s definitely been a difficult transition.
I appreciate you checking in with me!😘

Jump to this post

Add Metamucil one tsp after eating. It will bind everything together and move smoothly. I sympathize deeply. Don't get constipated with anti- diarrhea meds or you will get awful cramps! Remember your colon is relearning how to handle food.

REPLY
1 reply
cjay | @cjay | Sep 29, 2023
In reply to @catherine1290 "Add Metamucil one tsp after eating. It will bind everything together and move smoothly. I sympathize..." + (show)
@catherine1290

Add Metamucil one tsp after eating. It will bind everything together and move smoothly. I sympathize deeply. Don't get constipated with anti- diarrhea meds or you will get awful cramps! Remember your colon is relearning how to handle food.

Jump to this post

My doctor said to stop taking fiber when she told me it was ok to take the loperamide. (Today I am FAR from constipated. Still)
Did you just add the 1 tsp to water?

REPLY
catherine1290 | @catherine1290 | Sep 29, 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

Yes add it to water and drink it all quickly as it turns to gel within a minute. Good luck and remember this is all worth it!

REPLY
1 reply
cjay | @cjay | Sep 29, 2023
In reply to @catherine1290 "Yes add it to water and drink it all quickly as it turns to gel within..." + (show)
@catherine1290

Yes add it to water and drink it all quickly as it turns to gel within a minute. Good luck and remember this is all worth it!

Jump to this post

Thanks Catherine. My surgeon said it was fine, and I started it today. 🤞

REPLY
cjay | @cjay | Sep 30, 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

@catherine1290
Were you able to have protein drinks or smoothies immediately after? Or should I avoid dairy for a while?
I’m mostly eating just plain rice and chicken breast.
Thanks!

REPLY
catherine1290 | @catherine1290 | Sep 30, 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 was told to return to a regular diet. I found that pasta helped bind things together but avoid spicy hot foods for a few months. I ate a lot of tossed salads which I craved as I had to avoid them during the 2 1\2 years I had the ileostomy.

REPLY
View MoreView Less
Please sign in or register to post a reply.