Chronic diarrhea after chemo; any suggestions?

[Sybil71]

Hello lovely ladies; unfortunately my disease came back after 2.5 years and 70 cm of my small intestines had to be removed with surgery. 6 cycle of chemo is given. 4 finished so far. But i'm experiencing terrible diarrhea. Everyday more than 10 (sometimes 18) visits to restroom and pain during after the defecation. Frequent wake ups during the night to visit the rest room, so I can get a full sleep. I am taking imodium and diphenoxylate/atropine with a strict diet. But they don't help that much. Any one experienced similar side effects and managed to deal with it. It'd be great help if you share your solutions. 🙏

[Fluffyjumper]

Hello Sybil71

I’m sorry to hear about your problems. Diarrhoea could be due to either your surgery or the chemo. Removing any section of bowel can result in diarrhoea or nutrient deficiency as any food you eat has less distance to travel before exiting. Surgery can also result in infections causing diarrhoea. It can take months for your body to adjust after surgery. Diarrhoea is also a relatively common side effect of chemo.

You need to raise this problem with the chemo team of go back to your health team and see if there’s anything else that can help or if there could be post surgical infection or other issues.

The key is to keep drinking lots of fluids and rest when necessary.

[Sybil71 in reply to Fluffyjumper]

Thank you fluffyjumper. I have in contact with the chemo team and they know the problem; last month i spent 3 days in hospital to receive vial nutrition. But when i’m at home, it’s really difficult to manage with frequent defaction and pain. It seems like i have to be patient until the chemo cycles are finished 😔

[Fluffyjumper in reply to Sybil71]

Thank you. You must be feeling so fed up and tired.

[Sybil71 in reply to Fluffyjumper]

Exactly. And it is increasing after each cycle because the drugs are accumulating more in the body. My life is mostly at home, not able to go outside. My diet is very strict, no fiber, meaning no vegatables, salad or most of the fruits…

[Fluffyjumper]

I feel for you. I made the mistake last week of cooking a high fibre meal with indigestible fibre (Jerusalem artichokes) after a visit to my parents who both had diarrhoea. I had diarrhoea and abdominal pain on the way to work, 8 ‘restroom’ visits in the morning and ended up taking a day and a half off work plus feeling awful all weekend. Plus all the washing, changing bedding. It’s exhausting.

I hope you get something sorted out and can get back to some kind of normality.

Ovarian cancer is so difficult to cope with. We go through surgery and chemo, it comes back, more chemo. We spend so much time worrying about every change in our body. It eats into our sense of self. We are all so strong but coping with ‘surprises’, especially on grey, windy January days takes supreme fortitude.

[Sybil71 in reply to Fluffyjumper]

I have been presceibed Optifiber and Modulen IBD (both from Nestle) recently. Although Optifiber is mainly used for consipation, my gastroenterologist told me that it also helps to form and bring together the gaita; resulting less defaction. I’m now trying it. I am also trying Modulen IBD for extra calories since I have lost 14 kilos, down to 43.9 kg. I can not eat enough to increase my weight so i’m taking modulen IBD mixed with banana; like a shake 2-3 times a day; each glass 250 calories… you may want to talk to your doctor about these alternatives

[Seal004]

Sorry to hear you’re having such complications. I also had similar issues after my initial surgery and it was very difficult to go anywhere. My doctor put me on cholestyramine , which is a bulking agent. I take it every day. It’s a powder that you mix with water, and it helps tremendously, it doesn’t constipate you, but it eliminates, or at least reduces the diarrhea. It may be something to ask your doctor about. It is generally used for high cholesterol, and I also know people with Crohn’s disease that take it. Good luck!

[Sybil71 in reply to Seal004]

Thank you Seal004, i will definitely ask my doctor 🙏