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.

@cjay

Thanks for that info!

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I hope things are starting to smooth out for you. I was willing to put up with anything not to have that ileostomy anymore!

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@catherine1290

I hope things are starting to smooth out for you. I was willing to put up with anything not to have that ileostomy anymore!

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I was going to message you this week! Your Miralax trick is working wonders. I’m with you on the ileostomy.
I still take Loperamide at least twice a day, and the tsp of Miralax after I eat. I’m doing well. No pain, and I’m getting out and starting to feel like myself again. You really made this easy for me so far! 😘

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@cjay

I was going to message you this week! Your Miralax trick is working wonders. I’m with you on the ileostomy.
I still take Loperamide at least twice a day, and the tsp of Miralax after I eat. I’m doing well. No pain, and I’m getting out and starting to feel like myself again. You really made this easy for me so far! 😘

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So, how are you feeling now?
Any specific tips/tricks on food that you can share?
I’m a VERY active, outdoorsy person (hiking, sailing, skiing….) would you be willing to share the timing you experienced Re: getting out and about and active again? Just trying to get my expectations set before my reversal on Nov 9th. Thanks! xo

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@terrihodges

So, how are you feeling now?
Any specific tips/tricks on food that you can share?
I’m a VERY active, outdoorsy person (hiking, sailing, skiing….) would you be willing to share the timing you experienced Re: getting out and about and active again? Just trying to get my expectations set before my reversal on Nov 9th. Thanks! xo

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Hi @terrihodges, I see that you are getting ready to have your ileostomy reversal this week. I'm tagging @cjay so that they see your questions for them about what they experienced and what you might expect.

How are you feeling about the upcoming procedure?

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@terrihodges

So, how are you feeling now?
Any specific tips/tricks on food that you can share?
I’m a VERY active, outdoorsy person (hiking, sailing, skiing….) would you be willing to share the timing you experienced Re: getting out and about and active again? Just trying to get my expectations set before my reversal on Nov 9th. Thanks! xo

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I’m a month out from the reversal and I’m feeling pretty good. First tip.
Buy some adult diapers ( wish there was a better name!) you will need them for the ride home and maybe for the first few weeks, or longer. The issue is getting to the bathroom quickly enough. I use Always discreet boutique, low rise.
Take Loperamide (anti- diarrheal) every day. I took it 3x a day for the first few weeks. Now I take it every morning. (I didn’t yesterday and I had a bad time and couldn’t leave the bathroom for almost 1 hour.)
Eating is going to be trial and error like when you first had the ileostomy. Take Metamucil after EVERY meal. Just 1 tsp. Stirred into a little water to dissolve. This will save you!
I made rice (jasmine or basmati) and ate it at EVERY meal. And I kind of ate the same thing every day. Scrambled eggs and rice and toast in the morning, then Metamucil.
I grilled skinless & boneless chicken breasts every few days and ate that every day with rice.
I made the mistake of having a small salad with it one day and I couldn’t get off the toilet at all.
I still have not eaten lettuce again, but I have had tomatoes and celery.
I now eat tuna salad, egg salad, grilled cheese and soups. Also grilled plain fish. Not always eating rice, but pasta is good too to bind everything. Try out something first in a small quantity so you don’t get stuck in the bathroom for too long.
Go easy on exercise! The chance of incisional hernia is pretty common, so no straining too hard on the commode, and no lifting heavy. I still have a little burning pain at the site of the ileostomly, and some swelling there that seems to be finally going down. But my belly was pretty distended - I was told that’s swelling and scar tissue. I do a lot of walking, and gentle yoga and stretching.
I also take a very good organic probiotic EVERY DAY! Went to Whole Foods in the refrigerated supplements case.
I plan on going back to work at the beginning of December. I’m a chef, so long hours on my feet. That will take some navigating as far as what to eat and when. Every morning I have either my own high protein smoothie or an Ensure high protein drink 30 mg protein, 130calories only. (which sometime tends to give me diarrhea so I make sure to take Loperamide and Metamucil after. )
My surgeon sent me home with a big tube of zinc oxide. It saved my life! Your butt is going to get really sore and the zinc oxide gives you a barrier protection and it’s very very soothing. Make sure you go home with that!
I knew this was going to be a novel! Good luck, and be patient with your body and be kind to yourself😘
Edited to add: if you have ANY questions or concerns after you come home, don’t hesitate to send me a message. If I can help I sure will!

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@colleenyoung

Hi @terrihodges, I see that you are getting ready to have your ileostomy reversal this week. I'm tagging @cjay so that they see your questions for them about what they experienced and what you might expect.

How are you feeling about the upcoming procedure?

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Thanks, Colleen.
I’m trying not to be concerned about the resulting lack of control, and hence freedom to be out an about.
Hearing from others and knowing what to expect can be a two-edged sword! 🤪
The tips I’ve gotten on what to eat (and not to eat!) have been very helpful.
I really appreciate this forum and all who take the time to participate - it’s been a huge help to me. Thank you! And here’s to Thursday!
👍
PS - went on a lovely, long hike yesterday - amazing sunset, bonfire, hotdogs, roasted marshmallows - life is good!

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@cjay

I’m a month out from the reversal and I’m feeling pretty good. First tip.
Buy some adult diapers ( wish there was a better name!) you will need them for the ride home and maybe for the first few weeks, or longer. The issue is getting to the bathroom quickly enough. I use Always discreet boutique, low rise.
Take Loperamide (anti- diarrheal) every day. I took it 3x a day for the first few weeks. Now I take it every morning. (I didn’t yesterday and I had a bad time and couldn’t leave the bathroom for almost 1 hour.)
Eating is going to be trial and error like when you first had the ileostomy. Take Metamucil after EVERY meal. Just 1 tsp. Stirred into a little water to dissolve. This will save you!
I made rice (jasmine or basmati) and ate it at EVERY meal. And I kind of ate the same thing every day. Scrambled eggs and rice and toast in the morning, then Metamucil.
I grilled skinless & boneless chicken breasts every few days and ate that every day with rice.
I made the mistake of having a small salad with it one day and I couldn’t get off the toilet at all.
I still have not eaten lettuce again, but I have had tomatoes and celery.
I now eat tuna salad, egg salad, grilled cheese and soups. Also grilled plain fish. Not always eating rice, but pasta is good too to bind everything. Try out something first in a small quantity so you don’t get stuck in the bathroom for too long.
Go easy on exercise! The chance of incisional hernia is pretty common, so no straining too hard on the commode, and no lifting heavy. I still have a little burning pain at the site of the ileostomly, and some swelling there that seems to be finally going down. But my belly was pretty distended - I was told that’s swelling and scar tissue. I do a lot of walking, and gentle yoga and stretching.
I also take a very good organic probiotic EVERY DAY! Went to Whole Foods in the refrigerated supplements case.
I plan on going back to work at the beginning of December. I’m a chef, so long hours on my feet. That will take some navigating as far as what to eat and when. Every morning I have either my own high protein smoothie or an Ensure high protein drink 30 mg protein, 130calories only. (which sometime tends to give me diarrhea so I make sure to take Loperamide and Metamucil after. )
My surgeon sent me home with a big tube of zinc oxide. It saved my life! Your butt is going to get really sore and the zinc oxide gives you a barrier protection and it’s very very soothing. Make sure you go home with that!
I knew this was going to be a novel! Good luck, and be patient with your body and be kind to yourself😘
Edited to add: if you have ANY questions or concerns after you come home, don’t hesitate to send me a message. If I can help I sure will!

Jump to this post

Thank you SO much for taking the time to pass on all this helpful info - I really appreciate it.
A chuckle for you - I went out last week and purchased a number of different brands of ‘lady diapers’ and the perfect ones are the ones in your picture - too funny! 😊
Thanks again. Here I go! xo

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@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 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?

REPLY
@terrihodges

Thank you SO much for taking the time to pass on all this helpful info - I really appreciate it.
A chuckle for you - I went out last week and purchased a number of different brands of ‘lady diapers’ and the perfect ones are the ones in your picture - too funny! 😊
Thanks again. Here I go! xo

Jump to this post

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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@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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