Will the accidents ever stop?

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DarknessEmbraced
Posts: 3576
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Will the accidents ever stop?

Postby DarknessEmbraced » Sat Aug 15, 2015 7:49 am

It's been almost 9 months since my surgery. I've had more accidents since surgery than ever before. I keep a food/symptom diary to try to pinpoint trouble foods but so far there doesn't seem to be a clear pattern. I know to avoid harder to digest foods like broccoli, cauliflower, cabbage, onions, etc.. I'll go from multiple small bowel movements a day, to constipation, then to diarrhea/loose stools with accidents. My surgeon said that the part that he removed(half of my rectum and half of my sigmoid) are only for storage so they shouldn't affect my digestion. He mentioned IBS. He said about taking extra fiber such as metamucil but I've been trying to get fiber from food. Dicetel has cut down the number of accidents and bowel spasms. I'm still on prednisone but have tapered down to 10mg and in another couple of weeks will be off of it. I know I sound like a broken record but I've been really struggling with this. Is this just something that I can expect to never go away because my digestive system has been forever altered?
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! :)

stevieb
Posts: 407
Joined: Sat Feb 09, 2013 12:26 am

Re: Will the accidents ever stop?

Postby stevieb » Sat Aug 15, 2015 8:12 am

It should get better with time. I used a thick dose of Metamucil with 3-5oz of water immediately after each meal to help thicken the stool and keep things moving together. It did the truck for me, no longer take it!
Dx age 33
12/19/12 Stage IV liver/lung
1/14-2/28/13 Folfox
3/27/13 rectal/lung rst; temp ileo
7/11/13 liver res/ileo rev
9/30/13 - Folfox
11/13,2/21 NED
3/14 lung recur;6/16-VATS
7/14 5 bi lung mets
10&11/15 laser lung surg
2015 Colondar Model
12/15 5 lung met-folfiri
5/15 NED
11/15 2 lung mets; cryoablation
1/4/17 2 lung mets; cryoablation
NED as of 1/23/17

DarknessEmbraced
Posts: 3576
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: Will the accidents ever stop?

Postby DarknessEmbraced » Sat Aug 15, 2015 8:25 am

My stool is usually ok in consistency until I have the accidents/diarrhea. Sometimes it's hard to pass. I can't use metamucil because it causes too much bloating and gas. Are there foods that would do the same thing? I wish they had Citrucel here because it's supposed to be easier on the system. I'm not sure if benefiber is better or not. I eat whole wheat bread and whole wheat pasta.
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! :)

jalusa
Posts: 221
Joined: Thu Apr 02, 2015 9:26 am

Re: Will the accidents ever stop?

Postby jalusa » Sat Aug 15, 2015 9:26 am

Order it on Amazon?
Hoping to get to resection with HAI pump.
Failed PVE - Searching for options
Chemo for life

MSJC
Posts: 158
Joined: Sun Jan 26, 2014 10:31 am
Location: Ashland City, Tn.

Re: Will the accidents ever stop?

Postby MSJC » Sat Aug 15, 2015 9:30 am

Do you still have your gal bladder?
Mike, 49 y/o at Dx 1/14 stage 3c
low rectal cancer 7 nodes positive
2/14 5 weeks chemo/rad. 5-fu
4/14 Lar gallbladder removed,
temp ileostomy
5/14 8 rds Folfox
10/14 reversal surgery
5/15 clean colonoscopy
6/15 clean ct scan

DarknessEmbraced
Posts: 3576
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: Will the accidents ever stop?

Postby DarknessEmbraced » Sat Aug 15, 2015 9:43 am

I'm in Canada so it would be more expensive for shipping even from amazon.ca then there's duties and taxes at the border. I still have my gallbladder.
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! :)

Mendezbo61
Posts: 12
Joined: Fri Aug 14, 2015 4:53 pm
Location: Virginia

Re: Will the accidents ever stop?

Postby Mendezbo61 » Sat Aug 15, 2015 10:34 am

I, include a lot of potatoes and white rice in my diet.I had almost had the same surgery did you had with 0/41 lymphatic nodes, no chemo/no radiation. It took about 8 months for my peels to start acting normal again. Hope this help you.
DX 3/14 Rectal Cancer
4/14 CT scan clear no mets
6/14 MRI scan clear
7/14 Da Vinci LAR Surgery @ MSK
0/41 LN negative
No chemo/no radiation
3/15 CT scan clear CEA 1.9
5/15 colonoscopy clear
7/16 Ct scan clear CEA 2.0
6/17 CT scan clear. CEA 1.6

Lee
Posts: 6202
Joined: Sun Apr 16, 2006 4:09 pm

Re: Will the accidents ever stop?

Postby Lee » Sat Aug 15, 2015 2:37 pm

Sorry for the accidents you are having. Some people on this board do daily enemas with a lot of success. There are a couple of threads on this subject if you do a search.

Good luck, hope it gets better for you.

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!

User avatar
kellywin
Posts: 492
Joined: Wed Jan 23, 2013 4:46 pm
Location: Northern CA

Re: Will the accidents ever stop?

Postby kellywin » Mon Aug 17, 2015 6:45 pm

Darkness - 9 months seems pretty early, if I remember correctly, I was still in a hit & miss stage. I'm sorry that the metamucil doesn't work for you, it has really changed my life. Foods made absolutely no difference for me. I would definitely try something else (maybe another brand?), I don't know that you're going to get the bulking and/or regularity just from food alone. I'm 2 years out, I have some crappy days, but they're rare, even so, accidents rarely happen, butt it takes a lot of time for your body to get used to things.
Kelly, mom 14 yo girl
Dx 11/15/12 Rectal Cancer @ age 40
Stage IIIC
5.5 weeks Xeloda & Radiation - complete 2/5/13
Colectomy 3/12/13, 7 of 14 nodes positive - no ileo
4/24/13-8/20/13 - 5 rounds Xelox, 1 Xeloda only

teachpdx
Posts: 634
Joined: Wed Jan 16, 2013 12:29 am
Location: Portland, OR

Re: Will the accidents ever stop?

Postby teachpdx » Mon Aug 17, 2015 8:46 pm

Hi Darkness, the docs don't seem to know what they're talking about when they say your digestion shouldn't change. They took out part of your rectum and sigmoid, it effects your body however it does. I would suggest Immodium. I had problems with clustering, etc until I started taking Immodium - 2/day. I make sure I eat whole grain bread and that is my best bet for regularity. Good luck and 9 months IS still early. I'm 2 1/2 years post reversal and still run into problems on occasion. :shock:
4/24/12 RC T3N1M0 age 53
5/23-7/2 - 26 chemorad - Xeloda
7/16 Lynch- MSH2
8/28 LAR w/ temp ileo, CR, 0/11,M0, hysterectomy
10/13 6 cycles Xeloda - completed only 1 1/2 due to HFS
3/12/13 - reversal
8/13 NED
6/15 - HFS gone!

sadysue
Posts: 986
Joined: Tue Aug 02, 2011 6:59 pm
Location: Charleston, TN

Re: Will the accidents ever stop?

Postby sadysue » Tue Aug 18, 2015 1:32 pm

Tomorrow is my 4 year cancerversary and I still have an occasional accident. Just two weeks ago was my last accident and thankfully, I was at home when it happened. I have not had many over the last few years but they are all memorable!!! My entire rectum was removed and a couple inches of colon and I usually have pretty good holding power...except for every once in a while :-( Good luck!
Rectal dx 4/2011 (Stage 3B - T3N1M0)
5FU/Rad - daily/6 wks ending 6/2011
Surgery 8/19/2011
Finished 8 rounds Folfox 2/2012
Ileo reverse and port out 3/2012
NED


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