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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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)

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 😊👍

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)

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

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!

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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.