Happy World Ostomy Day!

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Phuong
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Happy World Ostomy Day!

Postby Phuong » Sat Oct 06, 2018 5:38 pm

For over a decade, I went through treatments and surgeries for stage IV rectal cancer but never needed an ostomy. About a year ago, I had a recurrence that ended in me becoming an ostomate. Getting a colostomy wasn't a big deal to me because I have been in the CRC world for so long and I've been around plenty of ostomates, but I understand that many others have a difficult time coming to terms with it. While I haven't hidden the fact that I have a colostomy, I haven't exactly advertised it either. So since it's World Ostomy Day, I thought I'd tell you about my friend Stewie. He was named after the baby on Family Guy because sometimes he is cute, sometimes he makes me laugh, but oftentimes he is just a little a$$hole. Hope you are having an awesome weekend my friends. :D
Last edited by Phuong on Sat Oct 06, 2018 9:30 pm, edited 1 time in total.
Phuong
http://sonofamotherlessgoat.net/
dx'd Stage III Rectal (T3 N1 M0)
Now Stage IV mCRC

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

Re: Happy World Ostomy Day!

Postby CRguy » Sat Oct 06, 2018 6:31 pm

Phuong wrote:..... but oftentimes his is just a little a$$hole.
:shock:
Phuong wrote:Hope you are having an awesome weekend my friends. :D

Backatcha' homie :mrgreen: :mrgreen: :mrgreen:
Our Thanksgiving long wkend up here
too much food and wine ... and DESSERTS !!!!

what could possibly go wrong for someone with post surgical cluster plumbing like me ?????

Cheers
CR
Caregiver x 3
Stage IV A rectal cancer/lung met
11 Year survivor
my life is an ongoing totally randomized UNcontrolled experiment with N=1 !
Review of my Journey so far

Capercrohnieileo
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Joined: Wed Apr 11, 2018 12:42 pm
Facebook Username: Jayne Olson
Location: NS, Canada

Re: Happy World Ostomy Day!

Postby Capercrohnieileo » Sat Oct 06, 2018 7:05 pm

Happy world ostomy day! I don't have cancer but I do have a permanent ileostomy. My ostomy is named Kanye or Donald, always spewing crap! Happy Thanksgiving!


I'm also getting a new stoma (maybe on Friday) though it's a J tube.
Severe Crohn's colitis jan 2015
Developed fistulas feb 2015
Open total proctocolectomy with end ileostomy (bye bye colon and rectum hello barbie butt) because of fistulas, Crohn's and crc risk May 5, 2017
Gastroduodenal Crohn's Nov 1, 2017
Severe Gastroparesis (delayed gastric emptying) Nov 9, 2017 GES showed 70 % remaining in stomach at 4 hrs. Normal is <10%
Jejunostomy (J tube) surgery sometime in Oct 2018

mandosquiddy
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Location: Colorado
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Re: Happy World Ostomy Day!

Postby mandosquiddy » Sat Oct 06, 2018 7:37 pm

Well I have lurked on this board since I started cancer a year and a half ago. I didn't do it on purpose but I actually registered and posted today. Let just pretend it's for World Ostomy Day. I've had a colostomy since April of 2017. Like another poster I don't advertise it but I also don't hide. Sometimes it does like to advertise itself. Also like another poster, I might be getting a stoma change-up on Friday during surgery to what would be a temporary illeostomy
4/2007 DX: sigmoid colon cancer
colon resection with colostomy.
stage II with one positive margin
5/2017 to 11/17 12 rounds of FOLFOX chemotherapy
11/17 to 12/17 Increase in back pain and testicular pain.
CEA increased, CT scan indicated mass on rectal portion of colon
1/18 to 2/18 25 rounds of radiation treatment
5/18 surgery with interoperative radiation and bladder/ureter modification
7/18 normal blood work and CT scan
9/18 increased CEA, mass on outside of small intestine
10/18 surgery with HIPEC

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Phuong
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Facebook Username: Phuong Ly Gallagher

Re: Happy World Ostomy Day!

Postby Phuong » Sat Oct 06, 2018 9:35 pm

CRguy, slow and steady should be your motto this weekend. So much to be thankful for.

P.s. Just claim one of the restrooms and tell everyone it's off limits! And then, have an extra helping of dessert for me. :)
Phuong
http://sonofamotherlessgoat.net/
dx'd Stage III Rectal (T3 N1 M0)
Now Stage IV mCRC

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CRguy
Posts: 9611
Joined: Sun Feb 10, 2008 6:00 pm

Re: Happy World Ostomy Day!

Postby CRguy » Sun Oct 07, 2018 12:09 am

WORD !

BUTT ..... Pumpkin pie or apple ???

:mrgreen: :mrgreen: :mrgreen:
Caregiver x 3
Stage IV A rectal cancer/lung met
11 Year survivor
my life is an ongoing totally randomized UNcontrolled experiment with N=1 !
Review of my Journey so far

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Phuong
Posts: 1439
Joined: Mon Jun 14, 2010 10:43 pm
Facebook Username: Phuong Ly Gallagher

Re: Happy World Ostomy Day!

Postby Phuong » Sun Oct 07, 2018 1:10 am

Pumpkin!!! Especially if it's made with ice cream. Yum!
Phuong
http://sonofamotherlessgoat.net/
dx'd Stage III Rectal (T3 N1 M0)
Now Stage IV mCRC

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CRguy
Posts: 9611
Joined: Sun Feb 10, 2008 6:00 pm

Re: Happy World Ostomy Day!

Postby CRguy » Sun Oct 07, 2018 1:30 am

K .. K ... vanilla bean homemade ?
OR Ben and Jerry's / Haagen Dazs ... ?
OK just messin' witcha
we use fresh dairy whipped cream
sorry :( family tradition ... BUTT ....
dinner is at 6 AND you have an open invite !!!!!

AND if you really wanna have a CR turkey dinner ... I BBQ it and serve with seafood Paella
( and maybe only a little ..or bigger bit of really good wine :shock: :twisted: :mrgreen: :mrgreen: :mrgreen: )

Love Peace and Harmony homie
with you on the Journey
CRguy
Caregiver x 3
Stage IV A rectal cancer/lung met
11 Year survivor
my life is an ongoing totally randomized UNcontrolled experiment with N=1 !
Review of my Journey so far

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CRguy
Posts: 9611
Joined: Sun Feb 10, 2008 6:00 pm

Re: Happy World Ostomy Day!

Postby CRguy » Sun Oct 07, 2018 1:51 am

I realize we have gone O/T here BUTT
Phuong is the REAL DEAL IMO and a very dear friend from Waaaaay Back
so we kid around a bit ....

Ostomy ?

Yup it saved my BUTT
I had a temp loop ileo after a TME resection
It was a learning experience for me BUTT not a huge issue, having been a practicing Vet for 30+ years
I was kind of "it is what it is"

AND I later came to understand the significance of being, what my D-I-L ( Nurse Admin ) called a lifer
one who had a permanent stoma.

Mine was a temp and I dealt with all the takedown issues in stride, which were actually more of an "issue" than the actual ileostomy, for me.

I know we have a number of troopers here who have had to get, or elected to get permanent ostomies ( Ileo or colo ) because of individual situations.

WHATEVER it takes = DO IT
The ostomy forums and CTalk are good places to be

Being serious now .....
Thanks Phuong for bringing this awareness back to CTalk now

Miss Molly and Belle, and so many others including YOU,
keep bringing the reality of our CRC issues back to us
with Love, Peace and Harmony
with support, knowledge and understanding,
unparalleled anywhere on the 'net

CRguy
Caregiver x 3
Stage IV A rectal cancer/lung met
11 Year survivor
my life is an ongoing totally randomized UNcontrolled experiment with N=1 !
Review of my Journey so far

Capercrohnieileo
Posts: 17
Joined: Wed Apr 11, 2018 12:42 pm
Facebook Username: Jayne Olson
Location: NS, Canada

Re: Happy World Ostomy Day!

Postby Capercrohnieileo » Sun Oct 07, 2018 9:19 am

I'm NPO this Thanksgiving (day 27 in the hospital on TPN because of gastroparesis) so est my share too!
Severe Crohn's colitis jan 2015
Developed fistulas feb 2015
Open total proctocolectomy with end ileostomy (bye bye colon and rectum hello barbie butt) because of fistulas, Crohn's and crc risk May 5, 2017
Gastroduodenal Crohn's Nov 1, 2017
Severe Gastroparesis (delayed gastric emptying) Nov 9, 2017 GES showed 70 % remaining in stomach at 4 hrs. Normal is <10%
Jejunostomy (J tube) surgery sometime in Oct 2018

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Shana
Posts: 401
Joined: Sun Jul 30, 2017 9:45 pm
Location: Sonoma, CA

Re: Happy World Ostomy Day!

Postby Shana » Mon Oct 08, 2018 11:43 pm

Phuong wrote: So since it's World Ostomy Day, I thought I'd tell you about my friend Stewie. He was named after the baby on Family Guy because sometimes he is cute, sometimes he makes me laugh, but oftentimes he is just a little a$$hole. Hope you are having an awesome weekend my friends. :D


Love the name and so fitting! I named mine BB short for "Bad Baby" and a few other combos. We often have discussions about her activity and noise, She saved my life after a blockage last year so I owe her but I wish she had batter manners! Thanks for sharing, Phuong! :D
DX - 12/16
MSS - KRAS wild
Well-differentiated adenocarcinoma at splenic flexure
Stage IV CC with liver mets
5FU - Failed twice - 1/17 and 3/17
Irinotecan + Cetuximab: 8/17
Irinotecan and Erbitux ran it's course. CEA rising
Primary tumor invaded tail of pancreas and spleen. Liver mets major concern
Y-90 radioembolization on 9/17/18, liver enzyymes have dropped. 10 Radiation treatments to primary tumor completed too. CT scan Nov to assess overall situation...


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