Ileostomy reversal coming up - what will be my new normal?

Posted by iamthekat @iamthekat, Apr 25 11:34am

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

Hi @iamthekat, I added your discussion to the Ostomy Support Group too. See https://connect.mayoclinic.org/group/ostomy/

You're asking good questions to prepare for and know what to expect after the reversal. I, too, would want to know what to expect with possible fecal incontinence or if you will need to wear protective underwear etc. I'm tagging fellow members who may have experiences to share, like @robinsonaocampo @wilcy and @mkat5955, who have had (or a family member) an ileostomy reversal, and @engelee who lives with an ileostomy.

@iamthekat, when is the surgery scheduled? What have you been told by your surgeon?

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@colleenyoung

Hi @iamthekat, I added your discussion to the Ostomy Support Group too. See https://connect.mayoclinic.org/group/ostomy/

You're asking good questions to prepare for and know what to expect after the reversal. I, too, would want to know what to expect with possible fecal incontinence or if you will need to wear protective underwear etc. I'm tagging fellow members who may have experiences to share, like @robinsonaocampo @wilcy and @mkat5955, who have had (or a family member) an ileostomy reversal, and @engelee who lives with an ileostomy.

@iamthekat, when is the surgery scheduled? What have you been told by your surgeon?

Jump to this post

I’m waiting for the hospital to open up. Surgery probably late May. Surgeon stated it will be different. I’m getting an IVC filter on 5/1 too

Just scared. I didn’t have to get chemo or radiation.

Middle age in diapers?

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@iamthekat

I’m waiting for the hospital to open up. Surgery probably late May. Surgeon stated it will be different. I’m getting an IVC filter on 5/1 too

Just scared. I didn’t have to get chemo or radiation.

Middle age in diapers?

Jump to this post

Thank you BTW

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Hi I had my reversal almost 4 years ago. I had ulcerative colitis and had a total colectomy. As far as what to expect everyone us different. Older people sometimes have more issues. I had the initial surgery just over 4 years ago, I was 1 week away from my 58th birthday. Recuperation was rough 12 weeks out of work. I couldn't wait for the reversal as I had an infection from one of the incisions that popped open underneath my illeostomy bad. Some people can eat anything, I cannot tolerate anything hot, spicy or acidic. I visit the restroom 9 to 10 times a day. I take metamucil 2x a day to bulk up. If I don't eat some sort of carb (bread, rice, pasta etc.) For dinner I will usually have some leakage while sleeping. I do wear pads 24/7.
Sometimes my butt is on fire and cannot always figure out why??? On another note I do feel better most of the time.
It just stinks sometimes with what to eat. I also still have Gerd & Gastritis. Good luck to all

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You may experience some stool incontinence because you have not used that sphincter muscle in awhile. Prior to the surgery, practice kegel exercises but squeezing that rectal muscle. This can help strengthen the muscle prior to surgery. Once the muscle gets stronger, you will experience less incontinence. What have others experienced after reversal surgery?

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Hi all, I want to let you know that on Oct 7, @candywocrn will be hosting a Zoom chat for ostomates. See details here: https://connect.mayoclinic.org/event/virtual-ostomy-support-group/
All welcome.

@iamthekat, I wanted to check in to see who you are doing? Did you have the reversal done?

@d1ane, how are you doing? You mentioned feeling like your butt sometimes feels like it is on fire. Does this happen at specific times or after specific activities or eating something in particular?

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