Preparing for upcoming colostomy surgery-any clues on what to expect?

Posted by wifeworry @wifeworry, Jun 4, 2023

Hello - We are preparing for upcoming colostomy surgery. Anyone willing to share their recent experiences? We really don't know what to expect: recovery time, training, follow-up visits, return to work etc. Hospital is 6 hours away, so also trying to figure out how long to plan to stay. Thank You!

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@colleenyoung

@rioa21, I'm tagging fellow ostomy members like @jtags @katydid77 and @patdame who have care at Mayo Clinic in Jacksonville to make sure they saw your questions as you prepare for your appointment.

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Thank you! I greatly appreciate it.

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@kenc

I have not had the some overall positive results. Please ask your surgeon about all the possible side effects. Hopefully your experience will better than mine. You may experience everything from recurring rectal area pressure, lower pelvic area pain, and hernia from the illostomy area. Also experiment with the various ostomy supplies out there.

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I’ve had a horrible time after my ileostomy. Severe rectal pain and pressure. So bad I’ve ended up on pain medication. Wish I’d never had this surgery because it’s permanent!
Hugs

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@klb23

I’ve had a horrible time after my ileostomy. Severe rectal pain and pressure. So bad I’ve ended up on pain medication. Wish I’d never had this surgery because it’s permanent!
Hugs

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Currently even the pain meds are effective. How long ago did you have your surgery? My colon was removed about 15 years ago and the rectum was removed about 5 years ago.

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@klb23

I’ve had a horrible time after my ileostomy. Severe rectal pain and pressure. So bad I’ve ended up on pain medication. Wish I’d never had this surgery because it’s permanent!
Hugs

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How long ago did you have the ileostomy? I had terrible pain and pressure for 2-3 months following my ileostomy. It finally subsided, then disappeared altogether within 4 months.
I took as many and all the pain meds I could get my hands on during that awful time.
It’s not permanent, and if you’ve been suffering for more than 3 months I would have a rectal scan with contrast to make sure there is no leak.
Good luck and keep us posted!

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@kenc

Currently even the pain meds are effective. How long ago did you have your surgery? My colon was removed about 15 years ago and the rectum was removed about 5 years ago.

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I let the AI improperly finish my sentence without proofreading it carefully. What I meant to say was that the pain meds are INeffective.

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@cjay

How long ago did you have the ileostomy? I had terrible pain and pressure for 2-3 months following my ileostomy. It finally subsided, then disappeared altogether within 4 months.
I took as many and all the pain meds I could get my hands on during that awful time.
It’s not permanent, and if you’ve been suffering for more than 3 months I would have a rectal scan with contrast to make sure there is no leak.
Good luck and keep us posted!

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I no longer have a rectum. So, would this scan be benficial in my situation?

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@cjay

How long ago did you have the ileostomy? I had terrible pain and pressure for 2-3 months following my ileostomy. It finally subsided, then disappeared altogether within 4 months.
I took as many and all the pain meds I could get my hands on during that awful time.
It’s not permanent, and if you’ve been suffering for more than 3 months I would have a rectal scan with contrast to make sure there is no leak.
Good luck and keep us posted!

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It’s almost been 3 years. It’s awful. Had tests done, they’ve come up with a host of reasons none that have stuck. I’m out of options as I live the the armpit of the world for healthcare. Doctors just don’t even know what to do. I had my ileostomy March 9, 2021. So it’s definitely lasted more than 4 months 🥺
It’s the worst when I eat, like perhaps it’s spasming when I digest food.
I’ve never had to take pain medication before, ever.
Worst decision I’ve ever made was this surgery.
Thank you for responding though. It helps to know others have lived through it. Hugs

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@kenc

Currently even the pain meds are effective. How long ago did you have your surgery? My colon was removed about 15 years ago and the rectum was removed about 5 years ago.

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I’m no longer a surgical candidate. I’m not absorbing nutrients either. Doctors just dismissed me to the point of severe malnutrition/malabsorption after the text book procedures didn’t work.
I did go today to the GI and am being treated for SIBO and had some labs done. For me now it’s about trying to enjoy the time I have. It’s truly hard not being able to drive to see my grandchildren because of pain (car rides and vibration) only amplify pain), eating causes rectal spasms, it’s so much! I have to find joy in just being alive, no close family here and all have their own lives. I’m so happy your pain resolved. Truly I am so happy for all that this surgery truly saved their lives. It ruined mine. I need a miracle to even see past this.
Thank you for responding.
I truly appreciate it. Makes me feel not so alone.
Hugs

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@klb23

It’s almost been 3 years. It’s awful. Had tests done, they’ve come up with a host of reasons none that have stuck. I’m out of options as I live the the armpit of the world for healthcare. Doctors just don’t even know what to do. I had my ileostomy March 9, 2021. So it’s definitely lasted more than 4 months 🥺
It’s the worst when I eat, like perhaps it’s spasming when I digest food.
I’ve never had to take pain medication before, ever.
Worst decision I’ve ever made was this surgery.
Thank you for responding though. It helps to know others have lived through it. Hugs

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I’m so very sorry. I can’t begin to imagine what you live with every day.
I wish there was something I could do or say that would help.
I hope you find some answers here. Keep fighting😘

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@cjay

I’m so very sorry. I can’t begin to imagine what you live with every day.
I wish there was something I could do or say that would help.
I hope you find some answers here. Keep fighting😘

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Thank you so very much. I have a telehealth appointment this morning with my palliative care doctor. I want to try to get off this pain medication even with the pain. It’s not helping much anymore but I know it’s affecting my mental health. Hopefully they can find a way to get me out of this pain no matter what it takes.
Again
Thank you deeply ♥️

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