Rectal cancer and fecal incontinence: Any remedies?

I alternate my father on loperamide and lomitil daily. At first things were hopeful but now not so much. He leaks through a maxi pad, a diaper, 2 boxer shorts and another pair of shorts into his jeans. I don't know how that happens, but I'm doing laundry and buying clothing like crazy.I got him off caffeine because I thought that would help, no dice.He is basically homebound. Occasionally he'll go out but only if he hasn't eaten anything at all.He is so old and frail (82) a colostomy is out of the question....Has anyone here tried psyllium fiber? I have read that it can help with fecal incontinence. To be honest, I don't see how, but I'm ending the road here on options. I'm going mad.

@rjjacobsen I saw your post come up in a psyllium search on Mayo Connect. I don't have colon cancer, am in a different group for IBD, I have a jpouch (no large colon) due to ulcerative colitis which began 40 years ago, I got my jpouch in 1996, then diagnosed with crohns in 2002. I have done quite well with my jpouch & bowel control up until about 30 months ago, when I began having fecal incontinence while asleep. I have been on meds for inflammation, and also have taken loperamide & metamucil, and some of the fiber capsules. At this point none of them seem to be working very well, daytime hours are fine it is just at night, I wake up 2-6 times per night, some are better than others. I have read where the whole psyllium husk because of the sugar in some of the other products. I appreciate the info that you listed and just ordered the Organic India brand. I may have other issues going on, but don't have an appt with my GI until mid April. I'm not sure if this is too personal, but wondering if you have a jpouch or an ostomy? I am thinking I may end up have an ilealostomy in order to have more control. I wish you the best. My husband passed from stage 4 colorectal cancer in 2008 that was undetected until it was too far along. #coloncancerawareness month is so important. Blessings to you.

I do have a separate post on here regarding nocternal incontinence, I really have no issues during the day, only when asleep, I usually wake too late. I have been taking metamucil w/sugar for years along with loperamide ( anywhere from 2 - 8 tabs/day). This has worked for many years along with azathioprine & antibiotics for any inflammation, in August I began Tremfya, I have not noticed much difference, tho I was hoping it would help out somewhat with the incontinence.
For those of you that use the psyllium whole husk fiber, I am interested in how much and how often you take this daily? Also how you consume it? Do you mix with small amount of water, use applesauce, oatmeal, peanut butter toast? I have seen some of these listed in ways to consume. I am just looking for some ways to get more than an hour or 2 of sleep at a time. Last night I woke up 5 times in a 6 hour period, I have been wearing incontinence underwear to bed for the past 2+ years, with pads inserted so that I don't have to dispose of the underwear each time, I can just replace the pad/liner. As all of you know sleep is very important to all of us, and the lack of it just really sucks, and staying up later than normal in order to be to control my bowel movements is not the answere either. Thanks for any comments and my best to all of you struggling with the same issues.

I do have a separate post on here regarding nocternal incontinence, I really have no issues during the day, only when asleep, I usually wake too late. I have been taking metamucil w/sugar for years along with loperamide ( anywhere from 2 - 8 tabs/day). This has worked for many years along with azathioprine & antibiotics for any inflammation, in August I began Tremfya, I have not noticed much difference, tho I was hoping it would help out somewhat with the incontinence.
For those of you that use the psyllium whole husk fiber, I am interested in how much and how often you take this daily? Also how you consume it? Do you mix with small amount of water, use applesauce, oatmeal, peanut butter toast? I have seen some of these listed in ways to consume. I am just looking for some ways to get more than an hour or 2 of sleep at a time. Last night I woke up 5 times in a 6 hour period, I have been wearing incontinence underwear to bed for the past 2+ years, with pads inserted so that I don't have to dispose of the underwear each time, I can just replace the pad/liner. As all of you know sleep is very important to all of us, and the lack of it just really sucks, and staying up later than normal in order to be to control my bowel movements is not the answere either. Thanks for any comments and my best to all of you struggling with the same issues.

Personally, I hate psyllium--it made my BMs slimy. I used dextrin powder instead--much better for me! However, some may find it constipating. Walmart has it, Equate brand.

Hello out there. I’m a 60 year old male who was diagnosed with squamous cell anal/rectal cancer 10/21/24. I went through two rounds of 5-FU/mitomycin chemo and six weeks of radiation from mid November to the end of December last year. I was hospitalized in January for a month right after finishing radiation treatment for an infection and pain control, and it’s been a slow and steady recovery overall.

Fast forward to July of this year. Repeat PET scan…cancer is gone! Primary oncologist tells me he can’t say the word ‘cured’ until I’m 5 years out cancer-free, but he’s quite confident it won’t be back. I should be elated, right? Well.. the overall pain and neuropathy persist, I’m still on significant amounts of pain medication, and the principle reason for this post; incontinence.

I’ve been wearing Depends for months, have been seeing a pelvic floor PT provider every six weeks for exercises, have tried increasing fiber intake my diet, I’m trying to balance meds, and I’ve experienced intermittent improvement and relapses. Currently, I’m in a setback with increased frequency of incontinence, increased cramping, and occasion bleeding. I’m just frustrated and depressed, which in turn affects my motivation to keep up with PT, diet, and social interactions. This has been happening to varying degrees for 10 months.

I guess what is weighing heavily on my mind is whether there is a chance for improvement or resolution of my issues with incontinence. If I continue to put in the time, the work, all the effort, is continence even possible? There are several factors at play with me right now. Because of the depression and frustration, I haven’t been committed to my PT exercises, my diet has been horrible, and I’ve isolated myself due to the embarrassment of it all.

I would love to hear about some possible success stories out there, or others’ experience that are similar to mine and what direction their journeys have taken them. I’ve restarted psychotherapy to try to address the depression and isolation, and I’m seeing my cancer team for my three month follow up following my cancer-free declaration next week.

Any advice? Any important questions or concerns I should bring up with my treatment team? The last conversation with one of my doctors included the evil ‘O’ word (ostomy). I would prefer to avoid that route, but maybe I’m not looking at that option the way I should.

Right now, the incontinence is limiting my social interactions, dating is out of the question, traveling for more than an hour or two by car is avoided, forget flights of that duration, it’s really affecting my every day. I just want to function somewhat normally again without the stress of wondering if I’ll have enough bowel control to be out in public without soiling myself and the embarrassment surrounding that. I sometimes cut errands or activities short to head home for ‘clean up’, I carry a ‘clean up’ kit in a shoulder sling bag wherever I go so that I can clean up/change if necessary when I’m out and about.

My apologies if I have ‘over shared’. This is my current reality, and I’m just reaching out to see if there are others going through or have been through similar circumstances, and what they have done to improve these issues. I’m hoping I’m not the only one going through all of this, and I’m anxious to hear from similarly situated folks to learn what their experiences have been and what interventions have done for them.

Thanks so much for your time.