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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Moderator
Colleen Young, Connect Director | @colleenyoung | May 14 8:54pm
In reply to @nlunetta "Im soon to have ostomy reversal , but only have a rectum , no colon... Very..." + (show)
@nlunetta

Im soon to have ostomy reversal , but only have a rectum , no colon...

Very anxious about aftermath as i am an active swimmer hiker etc

Help!!

Jump to this post

Hi @nlunetta, I hope you saw the helpful and encouraging reply to you from @kadet.

Lunetta, how are you doing? When will you have your reversal surgery?

REPLY
kadet | @kadet | May 4 6:36am
In reply to @nlunetta "Jennifer I too am anxious about my soon to be break down if my ostomy situation........" + (show)
@nlunetta

Jennifer

I too am anxious about my soon to be break down if my ostomy situation.....

I hear it takes up to one year to " sort out"

I am an active swimmer hikerv etc

The thought of diapers and explosive diarrhea
Is not appealing ...

Will be discussing this with the surgical dr soon

Jump to this post

Hi Jennifer,
I had an Ileostomy done July 28, 2023. It was a learning experience how to deal with a bag, changing it, raw skin in the beginning and being on top of ordering supplies. However, I was thrilled to have my bowels working after many years of constipation, pain, bloating and discomfort. Not to mention 7 medications daily just to go.
I had a reversal on Dec 21, 2023 and I was immediately able to go to the bathroom daily. My surgeon left me 3” of my lg colon to form a sygmoid colon and connected the small intestine to it. A previous surgery in 2019 removed 13” of my lg intestine that was twisted and tortuous. By doing the Ileostomy we found the pain disappeared after disconnecting the lg intestine and I would go many times a day. At my post op my surgeon told me to take 1 tbsp of fiber daily just to keep things moving. Since doing that, I go many times a day sometimes 4-5. Times which is fine for me. I did have pain around the anus the first two weeks, I used diaper rash cream, (used for babies) and that soothed the pain. I now have the feeling that I have to go and I’ve got time to get to the bathroom. Be aware of that feeling and go when it happens. Never push down trying to go or use your fingers to push. I learned from PT, to lean forward on my squatty potty and when you breathe in push out your rectum. Then sit back and let it work. Give it time to relax. I do a word search puzzle to sit there and wait for more. I swim, walk, drive a school bus knowing where I can use a bathroom and plan your meals to have time to go.
I take the fiber at night and by the morning I have a good bowel movement before I leave for work.
Be patient if you have an incision that heals from the inside out,(you won’t see the stitches), it takes time. Once healed I started swimming. Best wishes for your new life!

REPLY
nlunetta | @nlunetta | May 2 8:51am

Jennifer

I too am anxious about my soon to be break down if my ostomy situation.....

I hear it takes up to one year to " sort out"

I am an active swimmer hikerv etc

The thought of diapers and explosive diarrhea
Is not appealing ...

Will be discussing this with the surgical dr soon

REPLY
1 reply
nlunetta | @nlunetta | May 2 8:43am

Please chime in
If you have been reconnected from a gastruc ostomy bag !

About to be reconnected ....

Very anxious as i am an active swimmer , hiker , etc

I have no colon but a rectum ...

REPLY
nlunetta | @nlunetta | May 2 8:41am
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

Im soon to have ostomy reversal , but only have a rectum , no colon...

Very anxious about aftermath as i am an active swimmer hiker etc

Help!!

REPLY
1 reply
ams | @ams | Jan 3 4:25pm
In reply to @cjay "😆@cheesesteak hoagie with hot peppers! Thanks for the info. I plan to do what I did..." + (show)
@cjay

😆@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!😉

Jump to this post

So how are you doing after your reversal? Is it everything you hoped? Are you able to eat what you want? Hope you are feeling good.

REPLY
cutie1 | @cutie1 | Nov 15, 2023
In reply to @cjay "I’m a month out from the reversal and I’m feeling pretty good. First tip. Buy some..." + (show)
@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

Hi #cjay, thanks for the help, I'm on a waiting list for the reversal and having concerns about that new normal.it's good to know that you are not along in this process.

REPLY
cjay | @cjay | Nov 14, 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

If you need anything just give a shout. So glad you’re home👍🥳

REPLY
terrihodges | @terrihodges | Nov 14, 2023
In reply to @cjay "@terrihodges How are you feeling? Are you home from the hospital? Sending lots of good juju!" + (show)
@cjay

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

Jump to this post

Thanks for asking! 😊
I came home Monday afternoon, after 4 nights in hospital.
I cannot thank you, and everyone else, enough for the helpful advice.
It was all consistent with the advice from my team, and it worked.
I personally experience lots of nausea and vomiting following anaesthesia, and this time was no different - making it difficult for me to get up and walking and drinking lots of water. But I kept thinking about you and your advice and pushed myself to a great end result! What a wonderful difference to be back home in my own bed where it’s quiet and I can begin the process of experimenting with foods and amounts, etc. in privacy and peace.
I suspect the really hard part is just beginning, and I appreciate very much the help this platform and its participants have given me in getting started on this part of the journey.
I’ve been raving to my surgeon about the benefits and he actually took down the details 😊👍

REPLY
terrihodges | @terrihodges | Nov 14, 2023
In reply to @catherine1290 "Hi Terri, When I was in post-op reversal they gave me a Dulcolax suppository after waiting..." + (show)
@catherine1290

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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Thanks for the tip!

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