New To The Colon Club

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vancona
Posts: 1
Joined: Mon Jun 14, 2021 12:35 am

New To The Colon Club

Postby vancona » Mon Jun 14, 2021 12:50 am

Hello y'all,

I'm 31 and live in Houston, and I joined TCC a little late - I just had my ileostomy reversal after chemo for my colon cancer stemming from FAP. They call it Turcot's syndrome because I had brain cancer when I was a kid, anyone else have this?

I guess I've been in a denial a bit, thinking that I could return to normal after the reversal surgery. I'm accepting that that isn't going to really happen, so that's been an adjustment in itself.

To be honest I just don't know anyone that can relate to my issues, like having to change my diet and lifestyle, so I'm hoping that this can be a bit of a support group.

I'm only a week out from the reversal, and I'm trying to learn the best patterns for my diet, etc (my provider oddly gave me very little helpful information or direction). I'm trying to adhere to a Mediterranean diet that was recommended online. Does anyone have any experience with this, or any other tips?

Hope to chat with y'all soon. Thanks!

saltygirl
Posts: 155
Joined: Sun Feb 07, 2021 4:46 pm
Facebook Username: Salty.girl

Re: New To The Colon Club

Postby saltygirl » Mon Jun 14, 2021 1:17 pm

Sorry, that you are here. I am 45 years old. I had my iliostomy reversal in end of Dec 2020. I am completely back to normal in all areas now:-) I had colon cancer / left side / chemo and radiation. It seems that with rectal surgery you could have more challenges. But if you had colon cancer. Than you should be very hopeful. I am in Florida now with my kids for vacation.
Stage 4, distant lymph nodes May 2020, braf/kras mutations
11 folfoxiri
Intense radiation 1 week on distant lymph nodes
Surgery, hysterectomy, colon resection, distant lymph nodes resection
Complete pathological response to chemo.
NED 2021
NED 2022
NED 2023

User avatar
CRguy
Posts: 10472
Joined: Sun Feb 10, 2008 6:00 pm

Re: New To The Colon Club

Postby CRguy » Tue Jun 15, 2021 1:08 am

Hey vancona welcome to the best forum NOBODY ever wants to have to join !
If that makes sense ? :shock:

YES this is a support forum for sure ... BUTT ...
I only recall very few references to Turcot's syndrome specifically ... SO
you can be the one to start that new discussion ! ... IF you choose to

A week out from ileostomy takedown IS very early in the game, so give it time.
I joined the forum in 2008 ( YES I am that old !!! :evil: :mrgreen: ) just before my ileo takedown / reversal
and have been here ever since.
Great people, great support, great research of issues and great feedback
... BUTT ... not every answer may agree with what you want to hear.

BTDT for sure many times.

Diets ???
listen to YOUR body, keep a food diary, keep intake amounts moderate, avoid known "irritants"
consult CRC savvy dieticians/nutritionists
ASK ASK ASK here and with your health care team
AND ... keep pushing until you get the RIGHT answer for YOU !!!

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


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