Need advice on total proctocolectomy with revised colostomy surgery?

May 28, 2019 1:58 am

Has anyone ever had to have a total proctocolectomy with revised colostomy surgery?

Past Member
May 28, 2019 3:59 am

Hi, I'm not sure if you mean taking out a part of the large intestine all the way to the "bottom", thus removing the anus and creating a stoma? If that's it, then yes, I've had that surgery. I hope I didn't get it wrong.

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May 28, 2019 4:44 am

Yes. Do you remember how hard the recovery process was?

Past Member
May 28, 2019 6:21 am

Hi shadowchick, yes about 4 months ago. The recovery process is rough the first 2-3 months. You don't have much energy and you slowly try to keep walking from day one. The bed is the norm for awhile. The 3rd month is much better. It will take time for your bottom to heal. You may be on your sides a lot. Takes a while learning how to change the ostomy bag, home health nurse will help you out with generally everything. 2-3 months for your stomach to feel mainly healed. Please message me if you need to ask questions. This site is far the best for friendly answers from people who live it. Hope that helps some. :)

ron in mich
May 28, 2019 12:03 pm

Hi Shadowchick, I had a total proctocolectomy when I was in my mid-thirties and was sick and run down from UC/Crohn's, so my recovery took a while. It all depends on how healthy you are before the surgery. Good luck.

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May 28, 2019 1:05 pm

Thanks for replying. I have a couple more questions for you:

1) How many months of home health physical therapy did you have to do?

2) Did you have to change your diet and lifestyle?

3) I don't have cancer, but I am bleeding so heavily that I keep having to have transfusions. I am really sick. Do you believe that the surgery will help me get a better quality of life? (From your experience)

Past Member
May 28, 2019 7:19 pm

I sent you a message.

May 28, 2019 9:04 pm

We all wish you well anyway, mate.