Rectal cancer and fecal incontinence: Any remedies?

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.

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.

I also had anal cancer in April 2014. I understand what you are going thru. It is awful. I can relate as I recently had an embarrassing accident. Thank God it was only my family that had to endure it. I thought if I didn't eat anything before the gathering it would be better, but when I did eat everything came...well you know.. There is absolutely no way to control it.
I am now on Colestipol. It is a prescription that is used for high cholesterol but binds to the intestines. I cut mine in half as it seems to be constipating but better than the "other way".

@angielewis1959
That sounds useful
Do you take it when necessary,like when you go out or you are taking it regularly

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.

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.

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.

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.

Talk to a dietitian. That has helped me most days right now. Things that are soluble are the best for you. I eat a lot of potatoes, applesauce bananas oatmeal. If I stick to those items, I don’t have constant diarrhea. I can go 30 times a day on bad days if I don’t stick to that diet I’ve actually had a couple days now where I didn’t have diarrhea for the first time in five months. I had a foot and a half of my large intestine and 33 inches of my small intestine for surgery to remove the mass from my colon and I’ve had diarrhea since that I’m going to a G.I. specialist to check all the stool samples be sure there’s nothing else going on.. cancer doctor just gave me medicine and that was it didn’t help at all. it’s worth going to the G.I. doctor. They can prescribe you different medication that can also help you. I hope this helps you. I am finally seeing the light after five months. Take care and good luck.

I lost my entire colon due to cancer surgery, which means my feces is always runny (I have no colon to remove the liquid), difficult to control and frequent (8-9) times a day - including overnight events.

Per Mayo Clinic, I was directed to make a barely drinkable slurry of Metamucil (psyllium fiber) and drink it. The psyllium fibers absorbs excess water, helps make the stool more semi-solid and also easier to control. I do a heaping teaspoon in 2 ounces of water 4 times a day. 2 hours after breakfast, 1 hour after lunch, 2 hours after evening meal and in the middle of the night when I wake up for a bathroom run. The delays are to enable absorption of medications which this can impact. If you mix it with too little water, you can even eat it with a spoon much like applesauce although I don't recommend that.

So the normal use of MM is to drink it with lots of water to loosen stools, but it also tightens stools if used in a larger quantity with minimal water.

Some practical notes - some of which would apply to other readers.

1) amount and frequency will vary so some experimentation with quantity and frequency is necessary and can take some time to figure out.

2) Some of the non MM fiber supplements that have psyllium fiber also have granulated sugar which can aggravate diarrhea, I found these unhelpful. There are also some with artificial sweeteners such as aspartame to which some (like me) are allergic and there's a Metamucil product with Stevia. I use that one, but is more expensive. So read the label.

3) All of the ones I've used have maltodextrin, which is a carbohydrate. There probably are some psyllium fiber products that don't have it - so shop around if you're trying to cut carbs.

4) I have found that doing this consistently works best. When I'm unable to mix a powder in water, I take some (7-8) MM capsules at the water fountain - much easier to manage than carrying the powder form and mixing it.

Hope that helps!