Does anyone have chronic diarrhea?

Posted by hroberts257 @hroberts257, Dec 20, 2024

My husband was diagnosed with acinar cell pancreatic cancer of the head Oct 11 2024 he started with diarrhea prior to diagnosis May 2024 with c diff since then to loose stools have not gone away Tried creon Zenpep now protonix with viokase
Makes no difference they tested him for sibo and he was positive waiting for insurance to approve expensive antibiotic Takes Imodium lomotil and tincture of opium day 4-8 has 11-12 liquid stools talked to gastro today and he said 100 percent his pancreatic cancer but why isn’t enzymes working tried increasing dose does nothing Just wondering if others have this problem thanks

Interested in more discussions like this? Go to the Pancreatic Cancer Support Group.

Profile picture for jimhans48 @jimhans48

To me diarrhea is a mostly liquid discharge. I don't have that .What I do have is excessive bowel movements, up to twenty or more a day. These have been since the reversal of my ostomy bag that I wore for about two months after colorectal cancer surgery on May 31 of 2024. Most if not all of my rectum was removed since that is where the cancer was.
My output is soft solid waste. I keep track of the number of bowel movements since I started have WAY two many. six to eight a day is normal, but my high so far is thirty. That was about three weeks ago, from 3 AM until 11 PM that night, about 20 hours. Currently I've had 19 yesterday, Wed Feb 12 and another 26 so far today (it's currently about 9:30 PM), Thursday Feb. 13. I have doubled up tonight on my immodium anti-diarrheal Hoping it doesn't cause unforseen problems. I have had enough of this nonsense and realize there are NO support groups for this! I feel like I'm the only one in Denver Co. so affected, and probably am.

Best of luck to you,
JIM in Denver

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Dear Jim, I really hate to give medication advice, but my PC recommended chlorestyramine (sp?) powders for diarrhea (after Whipple in 2023) and it worked for me. After 3 months or so I don't take it every day and I am still OK. The interesting thing is I told my dear friend who also had colon cancer and part of her rectum removed about 25 years ago; she asked her doctor and has since had a respite from the constant diarrhea. That's 25 years of literally pooping her pants often. Courage, Carrie

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Thank you for moving me to this chat. When it was just once a month, my PCP felt if I am okay with a diagnosis of IBS, we would not do further testing. The FODMAP diet was suggested. I quit coffee, alcohol (I drink very little anyway), got lactatose-free milk and yogurt, stopped wheat, onions and garlic, but haven’t really done all the measuring. I was okay with that until the diarrhea started again constantly. I asked for the abdominal scan because my father died of pancreatic cancer at 66. I am 75. She suggested the upper endoscopy. It is about a month off. I personally called the gastro office to see if I could get anything soon and they didn’t have anything. I will try to get on the list, though.

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I have chronic diarrhea. My MD said there is nothing he can do because of my multiple abdominal surgeries. I am desperate for guidance on how to live with this condition. I requested help from my PCP and she said I need to make peace with my problems. I filed a grievance and was told they would respond in 30 days. I called and they said they would reply in 48 hrs. (has not happened). My blood pressure is extremely high. I don't know what OTC meds to take, how to manage my diet, enemas, exercises, etc. I am going crazy and need help.

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Profile picture for emstorm @emstorm

I have chronic diarrhea. My MD said there is nothing he can do because of my multiple abdominal surgeries. I am desperate for guidance on how to live with this condition. I requested help from my PCP and she said I need to make peace with my problems. I filed a grievance and was told they would respond in 30 days. I called and they said they would reply in 48 hrs. (has not happened). My blood pressure is extremely high. I don't know what OTC meds to take, how to manage my diet, enemas, exercises, etc. I am going crazy and need help.

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No wonder your blood pressure is elevated! Mine would be, too, if I had to deal with medical “professionals” like the ones you have encountered!

If you are able to, please find another PCP. The one you have now is very insensitive, to say the least!

If you have diarrhea, enemas are not the answer. In addition to the BRAT (Bananas, Rice, Applesauce and Toast) diet, add some cheese (real cheese - not the processed kind) to your daily diet too.
https://www.health.com/condition/digestive-health/diarrhea-home-remedies

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Profile picture for emstorm @emstorm

I have chronic diarrhea. My MD said there is nothing he can do because of my multiple abdominal surgeries. I am desperate for guidance on how to live with this condition. I requested help from my PCP and she said I need to make peace with my problems. I filed a grievance and was told they would respond in 30 days. I called and they said they would reply in 48 hrs. (has not happened). My blood pressure is extremely high. I don't know what OTC meds to take, how to manage my diet, enemas, exercises, etc. I am going crazy and need help.

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Thank you. My situation is complicated. I have had multiple surgeries starting with a colon resection for a urostomy upon bladder removal (cancer). Several hernias developed along with a torturous colon. Then aggressive radiation when bladder cancer returned which burned my rectum. Then a sepsis scar tissue issue requiring life-saving surgery. Rectum has no strength and is overly sensitive. I've seen a nutritionist with some good advice but inner working/gut bacteria seems to have a mind of its own. I take tons of immodium then have to use an enema after a couple of days. Otherwise, it is just non-stop. Never heard of the BRAT diet. Sounds intriguing. I'll give it a try. Thanks for you help. I live in a small town and Kaiser PCP is on a rotation no never see the same one twice.

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Profile picture for rashida @rashida

No wonder your blood pressure is elevated! Mine would be, too, if I had to deal with medical “professionals” like the ones you have encountered!

If you are able to, please find another PCP. The one you have now is very insensitive, to say the least!

If you have diarrhea, enemas are not the answer. In addition to the BRAT (Bananas, Rice, Applesauce and Toast) diet, add some cheese (real cheese - not the processed kind) to your daily diet too.
https://www.health.com/condition/digestive-health/diarrhea-home-remedies

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@rashida Having become more sensitive to dairy in my old age, I find eating cheese to actually trigger diarrhea. Perhaps different kinds of cheeses would make a difference.

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Profile picture for emstorm @emstorm

I have chronic diarrhea. My MD said there is nothing he can do because of my multiple abdominal surgeries. I am desperate for guidance on how to live with this condition. I requested help from my PCP and she said I need to make peace with my problems. I filed a grievance and was told they would respond in 30 days. I called and they said they would reply in 48 hrs. (has not happened). My blood pressure is extremely high. I don't know what OTC meds to take, how to manage my diet, enemas, exercises, etc. I am going crazy and need help.

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I have had chronic diarrhea for a year and a half. It is finally somewhat under control. Still no diagnosis. I finally got serious about taking psyllium husk. I kept going on and off, but it takes weeks of consistency for it to help. It at least thickens the watery diarrhea so that helps you to control it more. Hope this helps. I also started taking colestipol 2gm at night and am taking omeprazole 20mg for three months. I’m just starting to eat more vegetables. I eat mostly squash, carrots, and fennel. I have been eating mostly lean meat and carbs like rice and noodles to control things. Good Luck! I sounds like you’ve had a tough time of it.

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Profile picture for emstorm @emstorm

I have chronic diarrhea. My MD said there is nothing he can do because of my multiple abdominal surgeries. I am desperate for guidance on how to live with this condition. I requested help from my PCP and she said I need to make peace with my problems. I filed a grievance and was told they would respond in 30 days. I called and they said they would reply in 48 hrs. (has not happened). My blood pressure is extremely high. I don't know what OTC meds to take, how to manage my diet, enemas, exercises, etc. I am going crazy and need help.

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thank you. I'll look into those meds. Could work for me.
My rectum is dysfunctional from aggressive radiation so I have no control of watery or soft.

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Profile picture for emstorm @emstorm

I have chronic diarrhea. My MD said there is nothing he can do because of my multiple abdominal surgeries. I am desperate for guidance on how to live with this condition. I requested help from my PCP and she said I need to make peace with my problems. I filed a grievance and was told they would respond in 30 days. I called and they said they would reply in 48 hrs. (has not happened). My blood pressure is extremely high. I don't know what OTC meds to take, how to manage my diet, enemas, exercises, etc. I am going crazy and need help.

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I have had abdominal radiation, two small bowel resections, and many many small bowel obstructions. My gastro advises me to err on the side of diarrhea due to the obstructions. So I live with it, and have had to adjust my diet and my lifestyle. I have found that prescription Lomotil is more effective for me than Immodium. It is less constipating and doesn't cause the bloating I get with immodium. I also take amitriptyline at night that seems to help also. Best wishes and God bless you!

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