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Please Help-Proctocolectomy Dr says I need-

Posted: Tue Jun 14, 2016 5:02 pm
by StupidAssCancer
I was diagnosed with colorectal cancer 3 years ago. My cancer was very low and was removed leaving me with a permanent Ileostomy bag that has had to be redone 3 times due to failure and hernias etc. Today I had a colonoscopy and the dr told me I need to have a total proctocolectomy done ASAP. He said my entire colon is diseased, said my cancer could very well be back in the lining of it, said I have colitis and diverticulitis as well as a very Large Bezoar. Now keep in mind I havnt even used my colon for 3 years so I don't understand how a Bezoar would even accumulate. I have been having pain in my abdomen especially on getting up from lying down..however other than that I don't have much trouble.
My questions are-
1- What are the side effects long term scinerios any one has faced with having this done? I want the good gthe bad and the ugly before I make this deision
2- By not having my colon anymore will I be at higher risks for things like vaginal issues, bladder etc? I had read somewhere that without your colon holding everything else in place stuff can begin to fall out and it can be a mess. Anyone out there have any thoughts on this?
3-What is the recovery time most have experienced and any tips on making this an easier process? I've been through soooo much.
Thank you for taking the time to read and answer me. :cry:
Alys

Re: Please Help-Proctocolectomy Dr says I need-

Posted: Tue Jun 14, 2016 10:07 pm
by CRguy
For a quickie read thru Alys, you may wanna check out this search result from here on CTalk

search.php?st=0&sk=t&sd=d&sr=posts&keywords=proctocolectomy&fid%5B%5D=1

I don't have personal experience BUTT hope some who do will chime in and get you some feedback.

Cheers and Harmony sista'
Best wishes on the Journey
CRguy

Re: Please Help-Proctocolectomy Dr says I need-

Posted: Tue Jun 14, 2016 11:47 pm
by jhocno197
My husband was going to have an exenteration. He was told mesh would be inserted to hold things in place...

Re: Please Help-Proctocolectomy Dr says I need-

Posted: Wed Jun 15, 2016 3:25 pm
by MissMolly
I would like to welcome you to come over to the UOAA discussion forum (United Ostomy Association of America).

You will find many others with end ileostomies with total removal of the large intestine and anus (aka "Barbie Butt").

I a regular poster on the UOAA forum.
- karen -

Re: Please Help-Proctocolectomy Dr says I need-

Posted: Thu Jun 16, 2016 12:23 am
by StupidAssCancer
Can you tell me how to find that forum please?
Thank you

Re: Please Help-Proctocolectomy Dr says I need-

Posted: Thu Jun 16, 2016 3:37 am
by Pita
Aly, I think this is the forum, I googled it. Good luck to you...

https://www.uoaa.org/forum/viewforum.php?f=2