Please Help With Weight Loss/Endless Painful Constipation

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NHMike
Posts: 2503
Joined: Fri Jul 21, 2017 3:43 am

Re: Please Help With Weight Loss/Endless Painful Constipation

Postby NHMike » Fri Oct 16, 2020 8:23 pm

prayingforccr wrote:I have been STUNNED at the lack of response Ive received regarding this issue from “experts”.

They don’t seem to care.

I have gone to a nurse at my oncologist with tears in my eyes begging for help. Basically l, her response was “not my job”. My oncologist said basically the same thing “ Talk to pain management and a GI”.

“Take a couple of stool softeners”

Again, I’m down to 150 from 225 in 8 months and no one has said anything/intervened/helped me with this.


I had this same response from my radiation center. I asked about laxatives and they suggested low-power laxatives - I wanted to use Mag Citrate and they suggested milder stuff. They did offer CBD and painkillers. I think that it's just different with health professionals that have never felt what it's like going through it.
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

DarknessEmbraced
Posts: 3499
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: Please Help With Weight Loss/Endless Painful Constipation

Postby DarknessEmbraced » Sat Oct 17, 2020 12:40 pm

I'm so very sorry you're going through so much!*hugs* I hope you will be able to find a doctor who can help.*hugs*
Diagnosed 10/28/14, age 36
Colon Resection 11/20/14, LAR (no illeo)
Stage 2a colon cancer, T3NOMO
Lymph-vascular invasion undetermined
0/22 lymph nodes
No chemo, no radiation
Clear Colonoscopy 04/29/15
NED 10/20/15
Ischemic Colitis 01/21/16
NED 11/10/16
CT Scan moved up due to high CEA 08/21/17
NED 09/25/17
NED 12/21/18
Clear colonoscopy 09/23/19
Clear 5 year scans 11/21/19- Considered cured! :)

Jolene
Posts: 156
Joined: Wed Jan 23, 2019 10:17 am

Re: Please Help With Weight Loss/Endless Painful Constipation

Postby Jolene » Tue Oct 20, 2020 12:30 am

Oh dear, this sounds terrible.

I am shocked that MSK hasn't stepped up at all given how well known they are for their bowel cancer studies? How about writing something official to their medical board directors direclty and bringing it to their attention if your healthcare team couldn't be bothered ? Could it be an internal management issue ?

I would even consider highlighting the situation to official medical boards if you feel they are being negligent.

MSK's center is often quoted as the gold standard of rectal cancer management from my part of the world. I'm really shocked to hear of such news.

I hope you find some solutions soon.
Dx @ 39 F, married
Nov 18 - Dx of a mid-rectal tumour at T3N1M0 (2cm) 7cm from AV
Dec 18 - CRT, 28 sessions + Capecitabine at 3000mg daily
Jan - Mar - Wait and watch in place
Mar 19 - MRI, PET, sig flex and biopsy ordered to determine being a WW candidate.
Apr 19 - CCR. Surgery on hold. 6 cycles of Xelox.
Aug 19 - Completed 6 cycles of Xelox.
Oct 19 - Flex sig, biopsy, PET/MRI - clear
Jan 20 - Colonscopy, biopsy, MRI - clear
Jun 20 - Flex sig, biopsy, PET/MRI, CT - clear
Jan 21 - Tests scheduled

Lee
Posts: 6134
Joined: Sun Apr 16, 2006 4:09 pm

Re: Please Help With Weight Loss/Endless Painful Constipation

Postby Lee » Tue Oct 20, 2020 6:19 pm

Jolene wrote:Oh dear, this sounds terrible.

I am shocked that MSK hasn't stepped up at all given how well known they are for their bowel cancer studies? How about writing something official to their medical board directors direclty and bringing it to their attention if your healthcare team couldn't be bothered ? Could it be an internal management issue ?

I would even consider highlighting the situation to official medical boards if you feel they are being negligent.

MSK's center is often quoted as the gold standard of rectal cancer management from my part of the world. I'm really shocked to hear of such news.

I hope you find some solutions soon.


I truly believe there is more to this story than what we are getting. Ever hear that old saying "there are 2 sides to every story"! For someone who wants help, when I asked several specific questions, I got vague repeat answers as a response. You can't really help someone who want to be that way. Their opening thread did a lot of complaining about their current QOL issues, & to some extend, the medical professionals; butt when you try to get to the bottom of what is going on, this person does NOT want to talk about it.

Just my humble opinion,

Lee

P.S. Edited to add, this person has made it clear in other threads s/he would commit suicide vs getting a colostomy bag. When I asked why, what is so bad about a colostomy bag, no response. I thought my QOL issues were bad, thus my bag today. This person has me beat on poorer QOL issues. I don't regret my bag, gave me my life back & I was able to be a normal mom to my 2 kids & I got to see them grow up. Best decision I ever made. I am very open about my bag & most friends/people tell me if I had not told them, they never would have know I have a colostomy bag.
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!

Jolene
Posts: 156
Joined: Wed Jan 23, 2019 10:17 am

Re: Please Help With Weight Loss/Endless Painful Constipation

Postby Jolene » Wed Oct 21, 2020 8:44 am

Lee wrote:
I truly believe there is more to this story than what we are getting. Ever hear that old saying "there are 2 sides to every story"! For someone who wants help, when I asked several specific questions, I got vague repeat answers as a response. You can't really help someone who want to be that way. Their opening thread did a lot of complaining about their current QOL issues, & to some extend, the medical professionals; butt when you try to get to the bottom of what is going on, this person does NOT want to talk about it.

Just my humble opinion,

Lee

P.S. Edited to add, this person has made it clear in other threads s/he would commit suicide vs getting a colostomy bag. When I asked why, what is so bad about a colostomy bag, no response. I thought my QOL issues were bad, thus my bag today. This person has me beat on poorer QOL issues. I don't regret my bag, gave me my life back & I was able to be a normal mom to my 2 kids & I got to see them grow up. Best decision I ever made. I am very open about my bag & most friends/people tell me if I had not told them, they never would have know I have a colostomy bag.


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.
Last edited by Jolene on Wed Oct 21, 2020 8:47 am, edited 1 time in total.
Dx @ 39 F, married
Nov 18 - Dx of a mid-rectal tumour at T3N1M0 (2cm) 7cm from AV
Dec 18 - CRT, 28 sessions + Capecitabine at 3000mg daily
Jan - Mar - Wait and watch in place
Mar 19 - MRI, PET, sig flex and biopsy ordered to determine being a WW candidate.
Apr 19 - CCR. Surgery on hold. 6 cycles of Xelox.
Aug 19 - Completed 6 cycles of Xelox.
Oct 19 - Flex sig, biopsy, PET/MRI - clear
Jan 20 - Colonscopy, biopsy, MRI - clear
Jun 20 - Flex sig, biopsy, PET/MRI, CT - clear
Jan 21 - Tests scheduled

Jolene
Posts: 156
Joined: Wed Jan 23, 2019 10:17 am

Re: Please Help With Weight Loss/Endless Painful Constipation

Postby Jolene » Wed Oct 21, 2020 8:45 am

Duplicate - pls igore.
Dx @ 39 F, married
Nov 18 - Dx of a mid-rectal tumour at T3N1M0 (2cm) 7cm from AV
Dec 18 - CRT, 28 sessions + Capecitabine at 3000mg daily
Jan - Mar - Wait and watch in place
Mar 19 - MRI, PET, sig flex and biopsy ordered to determine being a WW candidate.
Apr 19 - CCR. Surgery on hold. 6 cycles of Xelox.
Aug 19 - Completed 6 cycles of Xelox.
Oct 19 - Flex sig, biopsy, PET/MRI - clear
Jan 20 - Colonscopy, biopsy, MRI - clear
Jun 20 - Flex sig, biopsy, PET/MRI, CT - clear
Jan 21 - Tests scheduled

NHMike
Posts: 2503
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: 52
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: 2503
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: 6134
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!


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