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

Posted: Tue Dec 03, 2019 11:11 am
by Hyesko
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??

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

Posted: Tue Dec 03, 2019 2:43 pm
by Gravelyguy
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.

Dave

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

Posted: Tue Dec 03, 2019 3:51 pm
by boxhill
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.

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

Posted: Tue Dec 03, 2019 5:35 pm
by Amarie123
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.

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

Posted: Wed Dec 04, 2019 5:20 am
by GreenLakeGirl
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.

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

Posted: Mon Oct 04, 2021 9:33 am
by DennisG
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

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

Posted: Mon Oct 04, 2021 10:46 am
by henry123
Hi
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.