Please Help-Proctocolectomy Dr says I need-

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StupidAssCancer
Posts: 69
Joined: Sun Sep 29, 2013 9:24 pm
Facebook Username: Alys.Geertsen
Location: Utah

Please Help-Proctocolectomy Dr says I need-

Postby StupidAssCancer » Tue Jun 14, 2016 5:02 pm

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
Stage 3c Colorectal Cancer
Surgery March 2013 Jpouch Temp Iliostomy
May 2013Chemo Infusions 5-FU Oxi Lev-Allergic
Radiation w/Xeloda Chemo-Allergic
Oct 2013 Reversal of Ostomy Nov 2013 Perm Ileostomy
Feb 2016 Ostomy collapsed moved to other side
Jun 2016 colon removed permanent ileostomy

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CRguy
Posts: 10246
Joined: Sun Feb 10, 2008 6:00 pm

Re: Please Help-Proctocolectomy Dr says I need-

Postby CRguy » Tue Jun 14, 2016 10:07 pm

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
Caregiver x 4
Stage IV A rectal cancer/lung met
13 Year survivor
my life is an ongoing totally randomized UNcontrolled experiment with N=1 !
Review of my Journey so far

jhocno197
Posts: 817
Joined: Mon May 11, 2015 9:33 pm

Re: Please Help-Proctocolectomy Dr says I need-

Postby jhocno197 » Tue Jun 14, 2016 11:47 pm

My husband was going to have an exenteration. He was told mesh would be inserted to hold things in place...
DH - dx Dec 2014, stage IV with bladder & peritoneal involvement - non-resectable
Colostomy
FOLFOX failed
FOLFIRI failed
Tumor actually distending pelvic skin
Not a candidate for last-ditch pelvic exenteration
Stivarga finally begun 2/19/16
Tumor growing/fungating
Lonsurf started 11/18/16
Died 3/10/17

MissMolly
Posts: 645
Joined: Wed Jun 03, 2015 4:33 pm
Location: Portland, Ore

Re: Please Help-Proctocolectomy Dr says I need-

Postby MissMolly » Wed Jun 15, 2016 3:25 pm

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 -
Dear friend to Bella Piazza, former Colon Club member (NWGirl).
I have a permanent ileostomy and offer advice on living with an ostomy - in loving remembrance of Bella
I am on Palliative Care for broad endocrine failure + Addison's disease + osteonecrosis of both hips/jaw + immunosuppression. I live a simple life due to frail health.

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StupidAssCancer
Posts: 69
Joined: Sun Sep 29, 2013 9:24 pm
Facebook Username: Alys.Geertsen
Location: Utah

Re: Please Help-Proctocolectomy Dr says I need-

Postby StupidAssCancer » Thu Jun 16, 2016 12:23 am

Can you tell me how to find that forum please?
Thank you
Stage 3c Colorectal Cancer
Surgery March 2013 Jpouch Temp Iliostomy
May 2013Chemo Infusions 5-FU Oxi Lev-Allergic
Radiation w/Xeloda Chemo-Allergic
Oct 2013 Reversal of Ostomy Nov 2013 Perm Ileostomy
Feb 2016 Ostomy collapsed moved to other side
Jun 2016 colon removed permanent ileostomy

Pita
Posts: 637
Joined: Wed Feb 10, 2016 3:48 pm
Location: So Calif

Re: Please Help-Proctocolectomy Dr says I need-

Postby Pita » Thu Jun 16, 2016 3:37 am

Aly, I think this is the forum, I googled it. Good luck to you...

https://www.uoaa.org/forum/viewforum.php?f=2
70yo Fem DX: 1/21/2016 RC Stage IV-Nodules lungs
MSS-Kras Wild-Lynch Synd Neg-Lung Biopsy 1/27/16-Port 2/19/16
MRI 7/7/16 Endometrial polyp found, watching LAR 7/19/16, No Ileostomy, Stage ypT3 N1
CT 11/7/16: Most mets stable,1 shrunk,1 new??
CEA Tests: 1/21/16=20, 12/22/16=5.3, 1/20/17=4.8, 2/15/17=6.2
9/20/16-1/24/17 Folfuri & Avastin
#10/10 Done
PET/CT 2/10/16-1/31/17=Some shrunk & growth to 2, Avastin failing ??? :evil:
2/21/17 Folfuri & Avastin


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