Please Help With Weight Loss/Endless Painful Constipation

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prayingforccr
Posts: 32
Joined: Sun Jun 28, 2020 4:44 pm

Please Help With Weight Loss/Endless Painful Constipation

Postby prayingforccr » Wed Oct 14, 2020 10:30 am

Diagnosed in nov with rectal cancer
Went to ny msk to participate in clinical trial in jan
5 weeks of radiation/capecetabine/m3814
Suffered terrible proctitis afterwards
Took 5 weeks off
Began FOLFOX
Completed 8 cycles on oct 8
Prior to chemo, took antibiotics for h pylori but never got test results from fecal exam
Had been using 25 mcg fentanyl patch until oct 11
I Have lost 75 lbs in 8 months
Afraid to eat due to painful bowel movements/clogged colon rectum
Bowel movements have been in the tub or while lying on my side on sofa
Week of oct 6–13 passed more than 50 feet of poop
The poop is thick, pasty, with texture of clay
The poop must be manually broken off leaving plenty in my anus/rectum/colon
The remainder often passed when I involuntary urinate followed by bowel contraction forcing poop out
Lots of night urination (involuntary)
Every two weeks or so, a few large blood globules will be passed (maroon jelly) completely seperate from poop——most recently tuesday
Need to poop regularly without pain so I can confidently eat
Need to poop on toilet to have a life outside of bath tub and sofa
Need to poop in a way that doesnt require me to digitally remove
Need to sleep in bed without fear of ruining bed
World currently ruled by endless, thick, pasty poop, painful bms, and a painful rectum that is never ever empty because of the poop

Can anyone help me?

Is this normal?
Nov 2020: colonoscopy
Dec 2020: diagnosed with stage 3 rectal cancer 6+cm tumor
Jan-mar 2021: 20 sessions of radiation, mon-fri capecetibine, mon-fri clinical trial drug m3814
Apr 2021: anoscopy confirmed tumor/scar 3.7cm with significant tumor necrosis but some persistent disease
July 2021: began 8 treatments FOLFOX
August 2021: ct scan reveals scar bed reduced to 2.7cm CEA is 1.5

Gravelyguy
Posts: 323
Joined: Thu Jul 05, 2018 6:03 pm

Re: Please Help With Weight Loss/Endless Painful Constipation

Postby Gravelyguy » Wed Oct 14, 2020 10:37 am

Oh I am so sorry you are going through this.

Am I correct and you haven't had surgery yet?

Post surgery, I think almost all of us rectal cancer people have issues. But if this is without surgery I would be seeking help too! My only suggestion would be to make sure you are taking a good probiotic and at a larger dose than the minimum. You had antibiotics and chemo so your bowl flora is probably pretty out of sync. I don't think this will be a cure all but sure could help. Also lots of water so that it isn't as sticky coming out. I know when I haven't had enough water everything just sort of sticks there.

So sorry you are going through this,

DAVe
6/17 dx mRC t3n1m1 very low rectal tumor 2 liver Mets 1.3 cm and .9 cm

6/17 begin 4 rounds Folfox w/Vectibix
9/17 short course radiation
10/17 rectal and liver resection LAR with coloanal anastomosis (no rectum left)
11/17-3/18 8 rounds Folfox
6/18 still NED!! Takedown
8/28/18 still NED! CEA .8 new low for me
10/18/18 colonoscopy clear
12/12/18 clear scans, CEA .9 still NED!
6/11/19 clear scans CEA 1.0
12/19/19 clear scans CEA 1.0 still NED!
6/17/20 clear scans CEA 1.1 still NED!

prayingforccr
Posts: 32
Joined: Sun Jun 28, 2020 4:44 pm

Re: Please Help With Weight Loss/Endless Painful Constipation

Postby prayingforccr » Wed Oct 14, 2020 10:42 am

No surgery yet, Dave.

Finished radiation/capecetabine/m3814, then FOLFOX.

Ive lost 75 lbs.

I don’t eat but the thick, pasty poop is ENDLESS

I have no quality of life
Nov 2020: colonoscopy
Dec 2020: diagnosed with stage 3 rectal cancer 6+cm tumor
Jan-mar 2021: 20 sessions of radiation, mon-fri capecetibine, mon-fri clinical trial drug m3814
Apr 2021: anoscopy confirmed tumor/scar 3.7cm with significant tumor necrosis but some persistent disease
July 2021: began 8 treatments FOLFOX
August 2021: ct scan reveals scar bed reduced to 2.7cm CEA is 1.5

utahgal7
Posts: 14
Joined: Fri Sep 11, 2020 12:04 pm

Re: Please Help With Weight Loss/Endless Painful Constipation

Postby utahgal7 » Wed Oct 14, 2020 11:01 am

Hi,

I am so sorry you are having to go through this. Constipation is rough! Have you talked to your doctor? You had mentioned that you are using a fentanyl patch. Do you think maybe this medication is contributing to your constipation? I think probiotics are helpful. However, probiotics did not help me. The only combination that worked for my constipation (and I am not personally recommending this combination) was Miralax, senna, extra fiber and a couple of tablespoons of olive oil daily. What I have learned is that constipation affects everyone differently and what works for one person may not work for another.

Good luck...Call your doctor ASAP and explain your misery!

Sending you hugs...I hope your situation improves.
02/20 Rectal Cancer Diagnosis
03/20 CEA 2.7 ST Radiation - 25Gy over 5 days
04/20 LAR surgery w/ ileostomy (only 6 lymph nodes retrieved)
04/20 T3N1M0
05/20 CAPOX (had to discontinue because Oxaliplatin caused temporary blindness in left eye)
06/20 CEA 0.9
08/20 Ileostomy reversal
09/20 CEA 1.4, CT chest/abdomen/pelvis; suspicious areas in liver
10/20 MRI liver; dx hemangioma

prayingforccr
Posts: 32
Joined: Sun Jun 28, 2020 4:44 pm

Re: Please Help With Weight Loss/Endless Painful Constipation

Postby prayingforccr » Wed Oct 14, 2020 11:38 am

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.
Nov 2020: colonoscopy
Dec 2020: diagnosed with stage 3 rectal cancer 6+cm tumor
Jan-mar 2021: 20 sessions of radiation, mon-fri capecetibine, mon-fri clinical trial drug m3814
Apr 2021: anoscopy confirmed tumor/scar 3.7cm with significant tumor necrosis but some persistent disease
July 2021: began 8 treatments FOLFOX
August 2021: ct scan reveals scar bed reduced to 2.7cm CEA is 1.5

utahgal7
Posts: 14
Joined: Fri Sep 11, 2020 12:04 pm

Re: Please Help With Weight Loss/Endless Painful Constipation

Postby utahgal7 » Wed Oct 14, 2020 12:03 pm

prayingforccr,

Same thing happened to me. You have to keep calling your doctor about it. The old adage, "squeaky wheel gets the grease" fits this situation. Also, I found this website helpful: https://www.mdanderson.org/content/dam/ ... oblems.pdf

Keep calling your doctor! When I was having problems with constipation, I think my oncologist and surgeon's nurses were getting tired of hearing from me. So after several phone calls, they developed a constipation strategy for me.
02/20 Rectal Cancer Diagnosis
03/20 CEA 2.7 ST Radiation - 25Gy over 5 days
04/20 LAR surgery w/ ileostomy (only 6 lymph nodes retrieved)
04/20 T3N1M0
05/20 CAPOX (had to discontinue because Oxaliplatin caused temporary blindness in left eye)
06/20 CEA 0.9
08/20 Ileostomy reversal
09/20 CEA 1.4, CT chest/abdomen/pelvis; suspicious areas in liver
10/20 MRI liver; dx hemangioma

Lee
Posts: 6128
Joined: Sun Apr 16, 2006 4:09 pm

Re: Please Help With Weight Loss/Endless Painful Constipation

Postby Lee » Wed Oct 14, 2020 12:16 pm

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



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”.



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


When you say you have talked to the oncologist and the nurse about your pain, are these people at MSK or at some other location? Do you have a lead doctor at MSK?

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!

prayingforccr
Posts: 32
Joined: Sun Jun 28, 2020 4:44 pm

Re: Please Help With Weight Loss/Endless Painful Constipation

Postby prayingforccr » Wed Oct 14, 2020 1:50 pm

I did crt in ny at memorial Sloan Kettering, and chemo locally in fla

I’m amazed at the volume of poop in my body.

AMAZED.

I was certain I was impacted, but a ct scan disagreed.

When I asked surgeon if I was impacted, the answer was “ You don’t need surgery”

No help offered. NOTHING.

I am visiting a new gi on Monday at cleveland clinics in fla
Nov 2020: colonoscopy
Dec 2020: diagnosed with stage 3 rectal cancer 6+cm tumor
Jan-mar 2021: 20 sessions of radiation, mon-fri capecetibine, mon-fri clinical trial drug m3814
Apr 2021: anoscopy confirmed tumor/scar 3.7cm with significant tumor necrosis but some persistent disease
July 2021: began 8 treatments FOLFOX
August 2021: ct scan reveals scar bed reduced to 2.7cm CEA is 1.5

prayingforccr
Posts: 32
Joined: Sun Jun 28, 2020 4:44 pm

Re: Please Help With Weight Loss/Endless Painful Constipation

Postby prayingforccr » Wed Oct 14, 2020 2:01 pm

I did crt in ny at memorial Sloan Kettering, and chemo locally in fla

I’m amazed at the volume of poop in my body.

AMAZED.

I was certain I was impacted, but a ct scan disagreed.

When I asked surgeon if I was impacted, the answer was “ You don’t need surgery”

No help offered. NOTHING.

I am visiting a new gi on Monday at cleveland clinics in fla

Tomorrow, I am going to begin taking 2T a day of Yakima Fruit Paste:

Ingredients:
2 1/2 cups water
4 oz Senna tea leaves
1 pound raisins
1 pound figs
1 pound prunes
1 cup brown sugar
1 cup lemon juice

PRAYING it works

I’m afraid I’m dying.
Nov 2020: colonoscopy
Dec 2020: diagnosed with stage 3 rectal cancer 6+cm tumor
Jan-mar 2021: 20 sessions of radiation, mon-fri capecetibine, mon-fri clinical trial drug m3814
Apr 2021: anoscopy confirmed tumor/scar 3.7cm with significant tumor necrosis but some persistent disease
July 2021: began 8 treatments FOLFOX
August 2021: ct scan reveals scar bed reduced to 2.7cm CEA is 1.5

User avatar
beach sunrise
Posts: 240
Joined: Thu Mar 05, 2020 7:14 pm

Re: Please Help With Weight Loss/Endless Painful Constipation

Postby beach sunrise » Wed Oct 14, 2020 2:37 pm

Goodness! That is terrible.
Find a really good GI doctor. Onc's aren't really the go to person for what you are experiencing I wouldn't think.
I hope you get some answers and relief very soon.
8/19 RC CEA 86 T3N0M0
Neoadj 5FU/rad 6 wk
Surg 1/20 APR - margins T4bN1a IIIC G2 MSI- 1/20 LN+ LVI+ PNI-
pre cea 24/post 5.9
FOLFOX
8 rds 6-10 CEA 11.4 4 more no oxa
7/20 CEA 11.1, 8.8
8/20 CEA 7.8
9/20 CEA 8.8, 9, 8.6
10/20 CEA 8.1
MHL1+
PMS2+
MSH2+
MSH6+
POLD1
Chem-sens test NCI "Test failed, neo adj CR worked. Not enough ca cells to test"

Lee
Posts: 6128
Joined: Sun Apr 16, 2006 4:09 pm

Re: Please Help With Weight Loss/Endless Painful Constipation

Postby Lee » Wed Oct 14, 2020 2:54 pm

Do your Dr.(s) at MSK know what you are going thru at this time? Is there any doctors who are concerned about you losing so much weight? The fact that you are afraid to eat. Or your current bathroom issues? Again do you have some type of lead Dr. at MSK? Who is calling the shots for your care. MSK or local folks?

If MSK is not aware of your current situation, you really need to let them know, especially considering you are in an experimental trial with them. If they do know, what are they saying??

When I was on chemo, FOLFOX was an experimental drug. Had not been approved by the FDA yet. I too was in an "experimental trial". I had to keep my Onc "current" on any/all issues I was having. When I started to lose some weight, I got the lecture from my Onc. Towards the end of treatment, I started to lose hearing, my Onc got me a "doctor to doctor" referral with an ear surgeon. Normally that first visit would take 3-4 weeks to see this surgeon. My Onc got me in in 48 hrs.

Who recommended the Yakima Fruit Paste? Unless it came from a doctor, hold off until that GI visit. When I was on chemo, I could NOT take anything without checking with my Onc first. This included over the counter vitamins.

Good luck,

Lee

P.S. Edited to add FOLFOX was deemed an experimental chemo, FDA had approved it for stage IV folks ONLY. They were still learning the side effects and effectiveness. I was getting it as a stage III.
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!

prayingforccr
Posts: 32
Joined: Sun Jun 28, 2020 4:44 pm

Re: Please Help With Weight Loss/Endless Painful Constipation

Postby prayingforccr » Wed Oct 14, 2020 6:52 pm

I did my crt/trial drug in ny at sloan kettering for 5 weeks (late jan-March)

I have completed 8 rounds of FOLFOX in fl.

Both are WELL AWARE of my pain/weight loss/loss of qol.

But NO ONE has stepped up to help me.
Nov 2020: colonoscopy
Dec 2020: diagnosed with stage 3 rectal cancer 6+cm tumor
Jan-mar 2021: 20 sessions of radiation, mon-fri capecetibine, mon-fri clinical trial drug m3814
Apr 2021: anoscopy confirmed tumor/scar 3.7cm with significant tumor necrosis but some persistent disease
July 2021: began 8 treatments FOLFOX
August 2021: ct scan reveals scar bed reduced to 2.7cm CEA is 1.5

Lee
Posts: 6128
Joined: Sun Apr 16, 2006 4:09 pm

Re: Please Help With Weight Loss/Endless Painful Constipation

Postby Lee » Thu Oct 15, 2020 6:28 pm

I will be honest, I'm not sure what to say.

MSK is usually more on top with people having side effects. I believe they have a team of experts that help people deal with cancer and ALL THE ISSUES associated with it. Like nutritionist, counselors, etc. They attack the cancer from many different directions. They are a #1 hospital in this nation for a very good reason.

You remind me of someone else we have not heard from of for awhile. The old timers know who I am talking about. . .

I hope you find your answers,

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!

FightCRC
Posts: 52
Joined: Fri May 25, 2018 10:39 pm

Re: Please Help With Weight Loss/Endless Painful Constipation

Postby FightCRC » Thu Oct 15, 2020 11:31 pm

I am so sorry you're going through this. But I'll also say that there's no way a bag is worse than this. I know you're anti-bag to the point where you'd rather commit suicide, but I can assure you your QOL will be vastly improved by a bag. Hope you will reconsider.

boxhill
Posts: 607
Joined: Fri Apr 06, 2018 11:40 am

Re: Please Help With Weight Loss/Endless Painful Constipation

Postby boxhill » Fri Oct 16, 2020 6:28 pm

I find it frankly unbelievable that no one has addressed this with you if you have described the situation as you have here, especially given your weight loss. Have they by any chance made suggestions that you are unwilling to accept?

Have you considered a daily morning enema? Some people have found relief from uncontrolled poop using this.

I'm very sorry that you are suffering in this way.
F, 64 at DX CRC Stage IV
3/17/18 blockage, r hemi
11 of 25 nodes,5 mesentery nodes
5mm liver met out
pT3 pN2b pM1
BRAF wild, KRAS G12D
dMMR, MSI-H
5/18 FOLFOX
7/18 and 11/18 CT NED
12/18 MRI 5mm liver mass, 2 lymph nodes in porta hepatis
12/31/18 Keytruda
6/19 Multiphasic CT LNs normal, Liver stable
6/28/19 Pause Key, predisone for joint pain
7/31/19 Restart Key
9/19 CT stable
Pain: all fails but Celebrex
12/23/19 CT stable
5/19 MRI stable/NED
Stop Key
8/20 MRI NED


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