Ileostomy Reversal - Managing Post-Surgery Accidents and Cleanup

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1097
amymariefred
Jan 14, 2024 8:12 pm

I saw my doctor for my follow-up after all of my studies (3.5 months post-op ileostomy). I'm all good and can proceed with my reversal. We talked about bowel movements after the reversal. She said to be prepared to have an accident in your hospital bed and get some adult diapers for after surgery. I had no idea! So here's my question: what can I do to minimize accidents after surgery? Will it be blow-out style and I'll need a shower after each accident? Should I sleep with a towel under me (I already have a waterproof mattress cover)? Help me understand what to expect. Will I be able to manage the cleanup on my own or will I need help? How long does that last? 

I'm concerned about my partner because he has a low tolerance for body fluids and his anxiety surrounding it is pretty high. We managed to get through this first part, but I'm worried about the next steps. Thanks. 

CrappyColon
Jan 14, 2024 9:30 pm

What type of reversal are you having? Remind me of your reason for surgery? I made an after-reversal supply list some people have asked for if you want it.

Has your partner ever been around a sick, vomiting child? If not, it might be a valuable experience in moving past some squeamishness around bodily fluids. Any accidents you may have won't be as bad as the above scenario.

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amymariefred
Jan 14, 2024 11:02 pm
Reply to CrappyColon

I had colorectal cancer and they removed about 7 inches of my colon (sigmoid). No chemo or radiation. It's an ileostomy reversal. I'd love a list, please!

My partner was raised in a family that shamed farting or burping. He had tons of foster babies around and hence puke and poop. He's just super anxious and doesn't even like to talk about my cat's litter box. Lol. Exposure therapy isn't likely to help.
Thanks!

JVM261
Jan 15, 2024 12:49 am

You had just 7 inches of your colon removed? And you have everything else? And your rectum is fully intact and you had no radiation at all? This sounds excellent to me. I don't even have 7 inches left of the large colon. Not that I'm belittling your experience at all. I'm sure it was quite difficult. Just saying I am sure you'll have an easy reversal from what I have read.

warrior
Jan 15, 2024 4:32 am
Reply to amymariefred

I feel for your partner. I get what he is going through.

This could be a test of all tests on your relationship.

Would sleeping in separate beds help until your system stabilizes?

Re: poop flow. Sorry... no experience... but from what I have heard, the more colon left equates to the success you will have beginning your new normal.

I have also understood from members that the direct connect, unlike yours, where the small intestine directly connects to the stump or rectum, requires diapers.

This doesn't concern you because you have more colon left.

Sure, you will likely poop all over short term, but it seems with a little time, management, and patience, the surgery result will reduce that 💩 from happening long term.

Best of luck.

Play it forward by keeping us members informed on your progress.

This could be another success story where there are so few. 🤗

 

 

 

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IGGIE
Jan 15, 2024 3:00 pm
Reply to amymariefred

G'day Amy, I had a J-Pouch for 18 years and I had to wear a pad every night because of accidents when you're asleep with no control, and I also had a waterproof cover on the bed. That's why after all that messy situation, I went back to a stoma and a Ken Butt. Now it's just perfect. Good luck. Regards, IGGIE

CrappyColon
Jan 15, 2024 5:00 pm
Reply to amymariefred

Amy, I had written a response and this site is still glitching… went to click submit and poof it was gone. Seems like the only way I don't lose something is if I'm using my laptop. So are they connecting the descending colon to your rectum? Or do you have a little sigmoid left as well? I know you said 7” and I know the average colon is 5 ft but I don't know if each segment has an average length. With how much colon you have left I wouldn't imagine many issues with your reversal. Do you have a loop ileostomy right now? Has the new connection already been made?
Walking at least a mile every day will help prepare your body. I did pelvic floor therapy before, in between, and after surgeries. I can't remember if it was you that said your surgeon said you didn't need pelvic floor therapy. Any surgeon who says that is not well-versed in female-specific healthcare. My colorectal surgeon has a subspecialty in pelvic floor medicine, so I'll go with what she says on how important those pelvic floor muscles are.
I hope your partner is being considerate of what your body has gone through and will be going through.

How I say things—I will always be on the patient's side first and foremost.

The underpads/chux will help with some of your cleanup concerns. Hope for the best, prepare for the worst. All things considered, I wouldn't worry ☺️

elledubuque
Jan 20, 2024 4:17 am

Well… I had a colostomy reversal about a year ago… I can tell you that the first weeks are poop city. You will be running to the bathroom often, so if you can pull it off, just stay home.

As a teacher, I timed my reversal after Thanksgiving so I could go on medical leave and be off until winter break ended.

Rule number one! NEVER TRUST A FART!!!! Only fart on a toilet!

Also, I can tell you that you will go through a stage of feeling like it was easier to have an ostomy. And in the beginning stages, this is true. I really struggled with this and had to train my brain to not go there. I certainly didn't want to will my reversal to be a failure and didn't want to forget the gratitude I should be feeling. While it will suck for a while, eventually pooping will slow down. I have posted other updates post my reversal, so you can look for those to see when my poops went from water to squiggles to tiny tootsie rolls. It took time.

You should buy some supplies…

Good Wipes (I like coco shea) supposedly flushable, but I am not willing to take the risk. Toilet paper can hurt with the extra wiping and never cleans everything well.

Panty liners for those can't-move-fast-enough moments

A&D ointment - big jar because your skin is going to be sore. Start using it before you need it because a sore butt sucks.

White circular cotton pads - like for removing makeup (to apply A&D to your bum without getting it on your hands or contaminating the container)

When I started feeling comfy going out, I made little mini kits of this stuff to keep in my bag, my car, and eventually my office. Small to-go wipes - I had individual-use stoma wipes and also got Prep H wipes for when my bum was a mess - nothing worse than sandpaper toilet paper in a public restroom.

My body is still not “normal.” While I do poop every day, its consistency is not a thing. My biggest struggle has been no one can really tell me the right diet, so experimenting with foods and taking it slow is important. I am surprised by the things I can eat without issue like sushi, pickled cauliflower, beans, and kale, but a single peanut has me running to the toilet for the rest of the night.

While it's been a challenge, I definitely don't regret my reversal.

elledubuque
Jan 20, 2024 4:27 am

Oh, and I did have adult diapers post-hospital for nighttime. Also, I kept a waterproof pad under my part of the bed. Target sells little ones. That way it was easy to wash if there was an issue.
But I never had an accident in the bed. No huge blowout.

My husband helped me when I did baseplate changes when I had my ostomy. I did all the cleanup and disposal of the poo bag, prepped my skin, and then he would align the fresh plate so it was well placed and I'd snap the bag on.

He never had to help me clean up post-reversal.

CrappyColon
Jan 20, 2024 2:15 pm
Reply to elledubuque

Elle, do you have access to a dietitian that works in a digestive disease department? (Bigger hospital) How much of your colon do you have left?

timcasey815
Jan 22, 2024 8:34 am

I eat at 6 pm then lightly snack, till go to bed ,as for the TMI orgasm, just do it,👍no worries, after a while,its like making cookies,just batter up, lol 

IGGIE
Jan 23, 2024 3:21 am

Keep an eye on Texas