A bag or a box

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A bag or a box

Postby muskokamike » Mon Dec 05, 2016 9:33 am

When I was dx three years ago a work colleague that I had dealings with was also dx with the exact same cancer. We saw each other weekly during the summers since he was in the marine business. I had my surgeries and was doing well but he refused surgery due to the fact his doctor told him he most likely would need a permanent colostomy. I was dumbfounded as to why he was so against the bag after all he was in his late fifties and how much crawling under and fixing boats did he really want to do going forward. "You could hire someone to do the work" I told him over and over. Finally I just told him flat out "It is either the bag or a box if you don't have surgery" He was a smart man but made stupid decisions and he still refused surgery. After a while a spot appeared on his lung and he was confident that doctors would just zap it away also the fact he had given up his 4 cans a day Pepsi habit would also chase the cancer away since he believed that cancer thrived on the sugar from his sodas. He was also buying natural potions that were going to stabilize then destroy his cancer cells. Unbelievable what lies are on the internet. Anyways the marina was all boarded up last summer, I just thought maybe he retired and I kind of forgot about him till the other day when I found his son on facebook to inquire about how he was doing. He had been housebound all summer and passed away last Halloween after a couple weeks with extreme pain in the hospital. For him his refusal to listen to doctors cost him dearly. I was dx on Halloween and I took the bag he took the box and passed on Halloween. Moral of the story...Listen to your doctors and do what they say. You can live with a bag and have a normal life. Most important stay away from internet quacks that will sell you overpriced potions to cure cancer.
Last edited by muskokamike on Tue Dec 06, 2016 10:51 am, edited 2 times in total.
53M Dx rc10/31/13
CT scan, BONE scan
MRI/T3N0M0 1 suspicious node
5 wks chemo/rad
LAR open TME 2/26/14
temp ileo
0/24 nodes pCR/pathological
Mop up Folfox (8) Mar/28-Jul/4
Aug/14 clear CT scan
8/27/14 reversal
Feb/15 clear scope
July/15 clear CT scan
Feb/16 clear CT scan
Feb/17 clear CT scan
Feb/18 clear scope
Feb/18 clear CT scan
Sep/19 clear CT scan DISCHARGED!
CEA levels 1.6 dx
1.6,1.4,1.7,2.4,2.9, 2.7 2.3 2.5 2.2 2.1 2.5 2.6 2.7
2.7 Sept 19
0-4 normal

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

Re: A bag or a box

Postby MissMolly » Mon Dec 05, 2016 11:26 am

I have a permanent ileostomy due to an extensive perforation (with resection of all of my large intestine + 10 inches of small intestine).

Having an ostomy is, simply, no big deal.

For anyone who may be having to consider ostomy surgery, understand that modern ostomy products are awesome. Light-weight, low profile, composed with elastic polymers. I wear a 4 inch mini-pouch. No one would know that I am wearing an ostomy pouch. It is simply not noticeable. You can wear skinny jeans and tight-fitting tops. You can wear all of your existing clothing - although I prefer to wear loosely fitting pants with a drawstring, but that is out of my own desire for comfort.

Ostomy pouching systems are air-tight. There is no odor. None. Zero. Nada. The pouches are silent, they do not make noise or rustle - the pouches have a soft cloth covering and most are composed of elastic polymers.

I empty my pouch about 6 times a day. It is a simple procedure that takes less than a minute. Taking care of my ostomy has become a routine as analogous as brushing my teeth.

There is no activity limitation with an ostomy. You can practice yoga, pilates, skate board, swim, bicycle, run/jog, play tennis, even go down a water slide.

I will agree that there is an emotional period of adjustment and adaptation. It is an individual process. I took to my ileostomy quite easily. In fact, I would argue that my "new normal" has certain benefits to defecating via an intact digestive system and anus. I never have to worry about being near a bathroom or being restrained by keeping to a bowel program and its particular timing. I never have to worry about constipation.

There is a quality life with an ostomy. My life did not measurably change with an ostomy. My other health ailments have had far more impact on my health and life than has the ostomy.

The United Ostomy Associaton of America has a genuinely supportive and caring forum, similar to the Colon Club. I encourage anyone who sees a possible ostomy on their horizon to log-on to the UOAA website and read and browse through the forum. You will find a wealth of information and real-time advice from both new and seasoned ostomates. During the early weeks of my recovery, the UOAA forum was my life-line. The friendships that I have made there have proved to be invaluable.

- 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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Maggie Nell
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Location: Melbourne, Australia

Re: A bag or a box

Postby Maggie Nell » Sat Dec 31, 2016 9:47 pm

DX April 2015, @ 54
35mm poorly diff. tumour, incidental finding following emergency r. hemicolectomy
for ileo-colic intussusception.
Lymph nodes: 0/22
T3 N0 MX
July 2019 : pending liver U/S, colonoscopy
rut roh

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Posts: 959
Joined: Thu Jan 28, 2016 1:38 am
Location: North Carolina

Re: A bag or a box

Postby BeansMama » Sat Dec 31, 2016 10:38 pm

That is the same question I ask my brother. He hasn't been diagnosed yet but he has so many polyps and tested positive for Lynch his doctor's feel it is safer to remove the colon and give him a permanent ostomy.

I have one, I have told him it really isn't that bad! Doesn't he want to be around for his kids and grandson?

He won't listen, not yet anyway, I'm hoping eventually he does. They removed precancerous polyps from my other brother. My sisters have both had hysterectomies as precautions.

Much of my extended family are executing the ostrich maneuver. I really wish they would get tested as well, so far every one who has been tested has come back positive. I don't want them to be like me and find out when they are stage IV and it may be too late.
41 yrs old
Tumor found 9/2015
Surgery 1 - 11/2015 LAR and colostomy
Surgery 2 - 11/2015 wound vac
Surgery 3 - 12/2015 revise resection, move colostomy
Mets to liver - tumor inoperable - one add'l met destroyed
Stage IVa (T3 N2a M1a)
Primary tumor 9 cm x 7.5 cm x 2 cm
Beginning Folfox 1/2016 - Failed
Beginning Folfiri and vectibix 8/2016 — Failed
Beginning Folfirinox + Avastin 11/2016 - Failed
Beginning Keytruda 1/2017
CEA drop from 345 to 7.3 after starting immunotherapy
Lynch positive 3/2016

Posts: 219
Joined: Mon Jan 07, 2013 12:54 pm

Re: A bag or a box

Postby zx10guy » Sun Jan 01, 2017 5:22 am

I know of a few situations where this is the case. A family friend has stage 4 breast cancer. While she's not swearing off what her doctor was recommending for treatment, I feel she's been a bit naive about how much going holistic and her current chemo treatment will help. I remember the shocked look on her face when we were hanging out with a neighbor who actually does cancer research with NCI. When she told him what she was doing, he told her in a frank manner, "it won't help." I had a frank conversation with her recently. I asked her how extensive her tumors are and if there has been any discussion about when surgery would be possible. She said surgery has never come up. I was shocked at this and told her frankly with all the hoopla about the latest medical advances, the only method proven to lead to a cure is surgery. She then said she doesn't know when to get a second opinion. I told her now. I said people make the mistake of waiting till it's too late to seek a second or even a third opinion. By then the person has progressed too far with their disease that what options there were are no longer available. The interesting thing is she and I have the same oncologist. I don't know what to think of it at the moment and I'm sure he wouldn't even talk to me about the family friend's situation.

The other is my brother. I still don't think he's gone in for a colonoscopy even after all I've been through. The sad part is he is a physician's assistant.

And I just remembered about my friend's wife. She kept ignoring pain in her abdomen saying it was nothing. Then finally, it got so painful she had to see a doctor. When the scanned her, it turned out to be stage 4 liver cancer. She died a few months after being diagnosed. The eerie thing about this is I danced with her at my wedding reception a few months prior to her diagnosis.

I just think many people prefer to not deal with the harsh realities and choose to believe in what they feel is comfortable for them. What makes this even more tragic is when they have a lot of caring people prodding them to get checked out and to take action.

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Joined: Sun Apr 16, 2006 4:09 pm

Re: A bag or a box

Postby Lee » Sun Jan 01, 2017 4:17 pm

A few months prior to my diagnoses, a man had written to Dear Abby about his recent colon cancer diagnoses and that he ended up with the bag. He hated the bag and wished that he had died instead. That struck me as odd, a possible premonition of what was about to happen to me. Anyway for me, getting the bag was the easy part, fighting the cancer was the hard part.

I'm sorry about your friend,

rectal cancer - April 2004
46 yrs old at diagnoses
stage III C - 6/13 lymph positive
radiation - 6 weeks
surgery - August 2004/hernia repair 2014
permanent colostomy
chemo - FOLFOX
NED - 10 years and counting!

Posts: 125
Joined: Sun Dec 14, 2014 5:29 am
Location: MN/FL

Re: A bag or a box

Postby hawkowl » Mon Jan 02, 2017 12:06 am

Wow...my colostomy is such a non issue! I have many other after effects of chemo and radiation but the bag does not slow me down.
Dx 12/2014 T3N2MX (distant LPLN) low rectal
12/2014-4/2015: FOLFOX (8 cycles)
4/2015-6/2015: 28 cycles of chemoradiation with xeloda
8/2015: Robotic APR with iliac node dissection; path showed ypT0,ypN0 (complete pathological response).
11/2015 scans clear, CEA 2.1
11/2015 parastomal hernia repair
3/2016 CEA 1.7
10/2017 CEA remains in normal range (1.4), scans stable.
6/2018 CEA still normal.
Now dealing with pyoderma gangrenosum.
Totally disabled due to oxaliplatin induced neuropathy and dysautonomia

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