Brother In Law's Total Colectomy - 40X a Day on Toilet

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Brother In Law's Total Colectomy - 40X a Day on Toilet

Postby Hyesko » Tue Dec 03, 2019 11:11 am

Hi everyone,

My 39 year old Brother in Law had a total colectomy 4 years ago. He does NOT have a colostomy bag. Since his surgery, his quality of life has been horrible. He's constantly dehydrated, and he has to go to the bathroom ~40 times a DAY - and it's all liquid. He hasn't had a solid bowel movement since his surgery 4 years ago. He's tried pro-biotics, B-12 supplements and CDB oil, but those either didn't help or made things worse. I'm doing as much research as I can to try and find some kind of relief for him. Any suggestions??

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Re: Brother In Law's Total Colectomy - 40X a Day on Toilet

Postby Gravelyguy » Tue Dec 03, 2019 2:43 pm

Hi Hyesko and welcome,

I don't have any real words of wisdom but think it is great that your brother in law has people in his life trying to help!

I can not imagine going that many times a day, the poor guy. I am wondering what his surgeon thinks? I did not enjoy my ileostomy but would greatly prefer that to what you brother in law is going through.

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 CEA .9 still NED!
6/11/19 CEA 1.0
12/19/19 CEA 1.0 still NED!
6/17/20 CEA 1.1 still NED!
12/15/20 CEA 1.1still NED!

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Re: Brother In Law's Total Colectomy - 40X a Day on Toilet

Postby boxhill » Tue Dec 03, 2019 3:51 pm

You didn't mention whether he has tried immodium. That's the first thing most people try, and I seem to recall that CRC patients are advised that they can exceed the recommended daily dose.

The other thing I can think of is plain psyllium. It can regulate stool consistency and help both constipation and diarrhea.

Poor guy, his situation sounds miserable.
F, 64 at DX CRC Stage IV
3/17/18 blockage, r hemi
11 of 25 LN,5 mesentery nodes
5mm liver met
pT3 pN2b pM1
BRAF wild, KRAS G12D
7/18 and 11/18 CT NED
12/18 MRI 5mm liver mass, 2 LNs 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
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5/19 MRI stable/NED
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Re: Brother In Law's Total Colectomy - 40X a Day on Toilet

Postby Amarie123 » Tue Dec 03, 2019 5:35 pm

Has he had more tests/scans done to find out what may be going on? If he’s going that many times a day that’s serious and sounds like more than a result of his surgery, given it was so long ago. For the short term Imodium in higher doses can help if he hasn’t tried this already. If it were me, I would also push my doctor(s) for testing also.

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Re: Brother In Law's Total Colectomy - 40X a Day on Toilet

Postby GreenLakeGirl » Wed Dec 04, 2019 5:20 am

You say he had a colectomy and no colostomy bag, but that doesn't really address what his new plumbing is like. He could have an internal pouch, like a j-pouch, in which case he might have pouchitis, which needs to be addressed by a doctor. If he has a straight connection, he might not have a lot of great options, but hopefully the surgeon created some type of reservoir for him.

If he's working with a doctor or surgeon, he can ask for prescriptions for Lomotil or Imodium or tincture of opium. He needs to up his fiber intake to at least 30 grams (25 for women) of fiber through food (beans, apples, chia seeds, avocadoes), fiber bars (look for bars like NoCow with at least 15-22 grams of fiber per bar) or supplements (psyllium powder). Probiotics: the only one that has gone through some clinical trials is Visbiome (formerly known as VSL #3), which is a refrigerated probiotic powder that has shown some promis in helping those with chronic pouchitis or ulcerative colitis. It's not cheap and isn't often covered by insurance, but if he's serious about trying a probiotic, I would recommend this one. Again, to get the clinical strength version, he will need a prescription and some patience to find a pharmacy that will order it.

If he's using Metamucil or other psyllium fiber supplements, avoid artificial sweeteners; Many of the sweeteners aggrevate diarrhea. And he needs to be reading the labels...It takes a surprisingly high amount of psyllium powder to make a difference.

There are people who never get a good quality of life after surgery and choose an ostomy. Quality of life is important, and it sounds like the surgeon hasn't done their job well if your BIL is still struggling four years later. An ostomy might be the right path to consider to help him gain freedom from the bathroom.
2009, age 37 with a 2yo: CC, IIIB (T4N1M0). IBD history
2010-11: FOLFOX, 12 rounds. 5 surgeries (3-step Ileal j-pouch, infection, VATS)
Currently NED.
Mom, you can go the hard way if you want, but the easy way is much easier. ~my 3yo

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Re: Brother In Law's Total Colectomy - 40X a Day on Toilet

Postby DennisG » Mon Oct 04, 2021 9:33 am

18 months ago I had my large intestine removed. I have Lynch syndrome and it was my second bout of colon cancer. My small intestine it’s attached to my rectum. My life has been a living hell since surgery. My weight dropped from 198 to 166. I have no energy, my stomach and intestines are always bloated with constant stomach pain; my quality of life has been greatly diminished. I have about 10 BM’s a day, however about every 4 weeks my BM’s are almost all water and I go 20+ times. I get very weak and lose 5 or 6 pounds. I lose my appetite and get nauseous after BM’s.

Please help.

Thanks, DennisG

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Re: Brother In Law's Total Colectomy - 40X a Day on Toilet

Postby henry123 » Mon Oct 04, 2021 10:46 am

I was in similar position for some time ( maybe 4-5 months) needing washroom 20-30 times .
Has he been tested for C Difficile infection ? If not , get it done.
Also I feel that exercise especially yoga exercises for stomach area may help.
Prayers for him.
46yo M msi-high Lynch +ve
5/16 lap AR 14/21 L nodes +ve
7/16 Capox 9 cyc
9/16 cea 2
1/17 550
PET CT mets in lung & peri
iri+ avast fail
3/17 10577
4/17 regro fail
5/17 cea 28800
5/17 CT inc in size of mes nodes ,onset of multi nodules in liver
6/17 Opdivo start
7/17 26754
8/17 5623
9/17 497
10/17 52
11/17 12
CT all clear exc a nodule in Lung. liver norm
1/18 3.6
4/18 2
Aspirin start
6/18 1.5 CT clear
12/18 1.1 NED
6/19 .9 CT clear
1/20 NED Opdivo stop

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