Please Help With Weight Loss/Endless Painful Constipation

Please feel free to read, share your thoughts, your stories and connect with others!
NHMike
Posts: 2555
Joined: Fri Jul 21, 2017 3:43 am

Re: Please Help With Weight Loss/Endless Painful Constipation

Postby NHMike » Wed Oct 21, 2020 8:56 am

Jolene wrote:I'm sure there is another side to the story. I guess we all come to terms with our diagnosis in different ways and at a different pace with different life circumstances. Perhaps he/she simply needs some more time to go through the motions.

When I was first diagnosed with the possibilities of a temp bag, LARs and perhaps even a permanent bag, I went into a downward depression spiral. It was the darkest moments of my life and mind you, this was still in the process of me being a potential WW when I should be somewhat "happier" than most so to speak.

I visited this board countless times and came across posts by parents being grateful for the surgery and the bag. Some of them even gave up the WW option and opted for surgery anyway as it was far more important to make sure that damn tumour is removed entirely so that they get a better chance at watching their kids grow up than risking it all for a WW recurrence. The bag was mostly insignificant for them. Unfortunately, it didn't resonate with me at all because I have no children. Being on the WW list thus became my obsession.

I can appreciate how the love for one's own children may have helped parents conquer even the greatest fear and uncertainties and that's really awesome and heartwarming. I'm married but at that time it felt like even having a spouse was not enough of a reason for me to want to live on if I were to have a bag or suffer from LARs. I was fortunate enough to have access to a good counsellor and she made things a tiny bit better (only after confirmation of me going on WW).

If I have to go through the idea of LAR and bag situation all over again, I'm sure I won't be taking it well. Perhaps as someone without kids, nothing will ever reassure me that the bag is okay unitl I actually have the bag ? But I hope the day never comes and I know I will not be okay if it did.


I didn't have this option due to how Neoadjuvant went (it worked great but the remaining tumor was still pretty big). I recall my surgeon telling me about the potential for a colostomy - and she would make the decision during surgery. I had the training for the Ileostomy but it didn't really sink in. And then I woke up with a bag. My surgeon has offered a colostomy many times as I do have LARS but I would rather manage LARS instead of getting a bag at this time.

There is a strong desire to remain whole and an external device is a reminder of not being whole (before having it anyways). This is despite wearing glasses, and a watch that measures all kinds of biometric data. So I definitely can understand the desire to do W&W as I'm living through the alternative.

But I am quite happy to be alive and I'm pretty sure that I wouldn't be today without the surgery.

It is indeed a tough choice when you are in-between the guidelines.
6/17: ER rectal bleeding; Colonoscopy
7/17: 3B rectal. T3N1bM0. 5.2 4.5 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/17-9/17: Xeloda radiation
7/5: CEA 2.7; 8/16: 1.9; 11/30: 0.6; 12/20 1.4; 1/10 1.8; 1/31 2.2; 2/28 2.6; 4/10 2.8; 5/1 2.8; 5/29 3.2; 7/13 4.5; 8/9 2.8, 2/12 1.2
MSS, KRAS G12D
10/17: 2.7 2.2 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/17: LAR, Temp Ileostomy, Path Complete Response
CapeOx (8) 12/17-6/18
7/18: Reversal, Port Removal
2/19: Clean CT

FightCRC
Posts: 56
Joined: Fri May 25, 2018 10:39 pm

Re: Please Help With Weight Loss/Endless Painful Constipation

Postby FightCRC » Wed Oct 21, 2020 5:54 pm

Going into this, a permanent colostomy is a terrifying idea, and the last thing anyone wants. It's an immediate emotional, visceral response. But usually, with education, positions will shift.

Because it's not just a choice between LARS and a bag. It can be the choice between a bag or Stage IV. Or a bag and an aggressive rectal tumor that invades nearby organs/structures. Which, in a gross irony, results in both a bag AND a tumor that can't be removed.

Also, this is rarely discussed, but it's a reality: A bag can afford a patient dignity and comfort at end of life that LARS can't/won't. This is going to be an eventuality, even if NED. As a friend who is desperate to get a permanent colostomy says, even if he gets to NED, he does not foresee himself lying on the floor at 80, trying to manage a daily enema.

I've been in many ostomy support groups for patients and caregivers. It's not uncommon to come across someone whose fear of poop overrides everything else that might worth living for. That's for everyone to figure out for themselves. I feel sorry for prayingforccr, but I respect his choice. I do hope he can see the other side, though.

NHMike
Posts: 2555
Joined: Fri Jul 21, 2017 3:43 am

Re: Please Help With Weight Loss/Endless Painful Constipation

Postby NHMike » Wed Oct 21, 2020 5:58 pm

FightCRC wrote:Going into this, a permanent colostomy is a terrifying idea, and the last thing anyone wants. It's an immediate emotional, visceral response. But usually, with education, positions will shift.

Because it's not just a choice between LARS and a bag. It can be the choice between a bag or Stage IV. Or a bag and an aggressive rectal tumor that invades nearby organs/structures. Which, in a gross irony, results in both a bag AND a tumor that can't be removed.

Also, this is rarely discussed, but it's a reality: A bag can afford a patient dignity and comfort at end of life that LARS can't/won't. This is going to be an eventuality, even if NED. As a friend who is desperate to get a permanent colostomy says, even if he gets to NED, he does not foresee himself lying on the floor at 80, trying to manage a daily enema.

I've been in many ostomy support groups for patients and caregivers. It's not uncommon to come across someone whose fear of poop overrides everything else that might worth living for. That's for everyone to figure out for themselves. I feel sorry for prayingforccr, but I respect his choice. I do hope he can see the other side, though.


I think that there are varying degrees of LARS and a lot of things that can help to manage it.

I'm certainly not terrified of LARS having lived with it for 30 months.

But cancer and living with the aftermath is a lot to process.
6/17: ER rectal bleeding; Colonoscopy
7/17: 3B rectal. T3N1bM0. 5.2 4.5 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/17-9/17: Xeloda radiation
7/5: CEA 2.7; 8/16: 1.9; 11/30: 0.6; 12/20 1.4; 1/10 1.8; 1/31 2.2; 2/28 2.6; 4/10 2.8; 5/1 2.8; 5/29 3.2; 7/13 4.5; 8/9 2.8, 2/12 1.2
MSS, KRAS G12D
10/17: 2.7 2.2 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/17: LAR, Temp Ileostomy, Path Complete Response
CapeOx (8) 12/17-6/18
7/18: Reversal, Port Removal
2/19: Clean CT

Lee
Posts: 6207
Joined: Sun Apr 16, 2006 4:09 pm

Re: Please Help With Weight Loss/Endless Painful Constipation

Postby Lee » Fri Oct 23, 2020 4:21 pm

Jolene wrote:
If I have to go through the idea of LAR and bag situation all over again, I'm sure I won't be taking it well. Perhaps as someone without kids, nothing will ever reassure me that the bag is okay unitl I actually have the bag ? But I hope the day never comes and I know I will not be okay if it did.


I hope you never have to decide on a bag either. 8)

People can get the bag for a number of different reasons without having cancer. One of my brothers co-worker suffered from Crohn's disease for years. That can be very painful. That type of pain can also cause depression. He finally took his doctor's advice, had his colon removed, got a permanent colostomy, got his life back. AND no more pain.

Good friend of mine has diverticulosis, has had a couple of surgeries to remove infected sections of her colon. This was a few years back, butt her surgeon suggested that if it comes back again consider getting a permanent colostomy. How many time does someone have to have surgery before the say no more? He was trying to prepare her "to think about it." She shot back, "I'm already there" thanks to our conversations.

I don't ever remember someone telling me about LAR or bathroom issues especially in the beginning. I too went into a depression. I was told by some professional I probably only had 30% chance of beating this. That threw me into a depression. After a few weeks, I decided to put my big girl pants on & fight this tooth & nail. If it was going to take me, it was going to be a long fight first. This was over 16 yrs ago.

One of the reasons for getting this bag, towards the end of my radiation treatment, my 11 yr old daughter was suppose to compete in a swim meet. I realized at the last minute I would not be able to leave the house, let alone see her compete. Had to call a friend to get her there. Living that type of life would have thrown me into an on going depression.

At some point, I realized, there are other medical issues that could be worse than a bag, like suffering from a serious stroke where half your body is pretty much gone , when other relatives have to wipe your bottom when you can no longer do so. I'll take the bag. Butt I do respect/understand your decision.

Lee
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 - 16 years and counting!


Return to “Colon Talk - Colon cancer (colorectal cancer) support forum”



Who is online

Users browsing this forum: No registered users and 125 guests