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!

Interested in more discussions like this? Go to the Ostomy Support Group.

kenc | @kenc | Sep 19, 2023

In reply to @klb23 "It’s almost been 3 years. It’s awful. Had tests done, they’ve come up with a host..." + (show)

I have had several doctor recommending pelvic floor physical therapy. So far that hasn't provded much releif though.

mlmcg | @mlmcg | Sep 19, 2023

What are you eating? Your body is not the one you had before and never will be. I had to have my sigmoid removed and a lot of my ileum in 2014. I had to find out what I could eat through trial and error. I basically started on "baby food" adding something new each week. If my body said that was good, no pain etc, I kept it on my "can have" list. Fiber foods had to go, beef was the first to go. Yes, hamburgers and all the good things I had on it had to go, forever. Having to have a balanced diet ment my new life style did not consists of the foods I once enjoyed. I now have foods my body finds that works for me. Fortunately I live by myself and don't have to fix two meals and smell the foods I once enjoyed that I can't have. When my body wasn't able to get the vitamins and minerals it needed because about a third of my GI track had been removed I started drinking a bottle of Boost a day. I first had it in the hospital and it works for me. I wouldn't recommend it until your bloodwork goes way down. It is expensive and not all stores sell it. As far as the pain the GI track is healing from the surgery and until it has healed expect pain. Doctors don't know how long it takes the body to heal from surgery, they only know what they can see. My first surgery took 20 years for me to have the same feeling again in my arm. Doctors have learned a lot in the last 60 years, they don't just cut. I have had laser surgery and I felt fine the same week. You may never be able to go to a friend's or family members home for a sit down dinner again, you and they will just have to accept it. If you do not take care of your body it may just get up and leave taking you with it. Good luck.
mlmcg

klb23 | @klb23 | Sep 19, 2023

In reply to @kenc "I have had several doctor recommending pelvic floor physical therapy. So far that hasn't provded much..." + (show)

Me too! Are you on medication or able to handle the pain without?

klb23 | @klb23 | Sep 19, 2023

In reply to @kenc "I let the AI improperly finish my sentence without proofreading it carefully. What I meant to..." + (show)

I’m so sorry. Mine aren’t either.
Hugs

klb23 | @klb23 | Sep 19, 2023

In reply to @mlmcg "What are you eating? Your body is not the one you had before and never will..." + (show)

It’s not the eating. I have SIBO and severe rectal pain since my ileostomy almost 3 years ago.
Yes I’m aware my body needs care and I’m caring for it the best way I know how. Unfortunately I have other health problems. It’s not just the ileostomy, what I’m eating, I’m not absorbing.
I apologize if you misunderstood anything.
Quite aware my body may give out and leave me, taking me with it. I’m on Palliative Care now.

Hugs

marcy1344 | @marcy1344 | Sep 20, 2023

In reply to @kenc "Currently even the pain meds are effective. How long ago did you have your surgery? My..." + (show)

I have only recovered from having my full rectum and anus removed and had a hernia removed from my ileostomy 16 wks ago. Very painful after for 3 wks.But worth it now as I was experiencing the same problem as you before surgery lot's of rectum pressure pain after having my large intestine removed 2 year's ago.

cjay | @cjay | Sep 20, 2023

In reply to @kenc "I no longer have a rectum. So, would this scan be benficial in my situation?" + (show)

Sorry I have no idea. I would ask your surgical team! Good luck

Colleen Young, Connect Director | @colleenyoung | Sep 28, 2023

@klb23 @cjay @marcy1344 @kenc and everyone else in this discussion and support group, I also want to let you know about the monthly Zoom Ostomy support group hosted by Mayo Clinic ostomy nurse Candy Boyes, R.N., RN-BC, C.W.O.C.N. All welcome.

The meetings are held first Tuesday of the month from 4 to 6 PM Arizona time. The next meeting is next week Oct 3. See details here:
https://connect.mayoclinic.org/event/ostomy-monthly-support-group-6/

Marco | @marco789 | Sep 29, 2023

In reply to @colleenyoung "@klb23 @cjay @marcy1344 @kenc and everyone else in this discussion and support group, I also want..." + (show)

Doh! My proctocolectomy is on that day. I'll try catch it next month! 🙂

rioa21 | @rioa21 | Sep 29, 2023

In reply to @marcy1344 "I have only recovered from having my full rectum and anus removed and had a hernia..." + (show)

I have been dealing with anal cancer for the last year. A PET scan says it’s still there while an MRI says is gone. I am having a biopsy this week for the final word. If the cancer is still there I will have APR surgery to remove the anus, rectum and sigmoid colon and have a colostomy. If the cancer is gone I will still need a colostomy. Please share about your experience with your surgery. Any tips I should know about? How long were you in the hospital? I will be having it done at Mayo in Florida.