Rectal cancer and fecal incontinence: Any remedies?

I worry about the water, and man it's expensive. Sugar doesn't really bother dad, so what I did was buy him these fiber gummies. I would buy the pills but he can't swallow them and I worried about water with the powder (and it's sometimes hard to get dad to drink what he considers "bad tasting"). They recommend 3 gummiers per day and I gave him 4 this afternoon. He's had a restful night, so maybe I'm on to something. If it changes I will try something else.

Thanks for the details of your regiment.
I'm in the same situation with no colon. (Had a TC-IRA). I've been relying on the pysslium husks capsules (and dancing around medication time effectiveness interactions as you mentioned) but will try the combo because I haven't been taking enough capsules to equate to what you're taking in the slurry. I have an occasional day with very acceptable loose, but solidish BMs, but most days, I have mixed results. And I do have some really bad days thrown in there. (Burning, bile, diarrhea) Still trying to figure this out. Aug will be one year since my surgery. Otherwise, I recovered well.

In addition, do you also drink a lot of fluids throughout the day? I was told to stay hydrated and drink lots of water (sometimes with a few sprinkles of IV Solution powder). Is this counter productive?

My surgeon said to eat 35 gr of fiber a day. Do you count food and vege fiber in your daily fiber routine?

Fiber is food, so always count food with fiber.

My dad gets roughly half that amount. He eats oatmeal in the morning, which is about 7 g fiber. And his psyllium gummies total are 10. So far it seems to help, but as usual sometimes a solution turns into nothing.

I would imagine if you don't have colon you'll need far more fiber.

I have bad days as well so I try to avoid variance from day to day and try to eat/drink/take MM consistently - that variance is what messes me up.

I try to limit fluid intake to a quart and a half unless I'm doing something to cause sweating... drinking over that amount encourages the diarrhea. Today, I was working outside in 84 F heat so I drank more water than normal. Even then, I don't over water because of the consequences. I avoid soda entirely - the non-diet (sugar HFCS) versions encourage diarrhea and I'm allergic to most diet pops. It is difficult to adjust the water and the psyllium husk powder based on activity. I do drink (and recommend) G-zero (Gatorade - zero calorie) or G2 (Gatorade - half sugar) or equivalent. I use this when I've been very physically active.

Yes, drinking lots of water is a good thing for most, but it is counterproductive to what the psyllium husks are doing. I think, but don't know, that you can increase water and psyllium husk powder proportionally if you are thirsty. I've thought about testing this, but haven't yet. I do know if I overwater the diarrhea returns and quickly. Ick.

I don't bother to count my fiber intake in a day.

Hope this helps.

My problem is that I have to do this for dad. He won't participate in his own Healthcare.

So when I need information from him he sometimes tells me something useful and sometimes hides stuff from me.

So far what seems to be working is immodium/lomitil, psyllium fiber, moderate water, and no caffeine, and no artificial sweeteners. And by "work I mean" 3 accidents a day instead of 6

That's really tough and difficult. I'm sorry.

Since he has trouble swallowing the capsules and can't handle the slurry, maybe gradually bump up the number of gummies since you're not dealing with constipation, but with diarrhea?

I'd also suggest a chat with somebody from the people who treated his rectal cancer... they may have some better suggestions or know of someone who does.

Hope this helps.

Thanks so much. My one gripe about this surgery was no substantial after care nutrition advice. My surgeon prescribed Cholestyramine because of the constipation side effect. I'm not taking it because of other potential side effects and I want to work with the husks first. I've just been overdoing the fluids and under-doing the husks. Your advice is so helpful.

I experimented yesterday with increasing my p husk capsules and it did make a difference, at least in the short term. I'm going to follow your suggestion about fluid intake and have measured out my daily water allotment. I believe that I was nervous about hydration and small intestine blockage. But, I'm willing to give it a try.

I also eat all bran with blueberries in the a.m. and it helps.

Do you eat anything you want or do you limit spices or other foods? I get very confused about what to eat and read about SIBO and the FODMAP diet. It feels overwhelming. Any thoughts? Do you take any probiotics or digestive enzymes?

Since I have genetic recessive mutyh-associated polyposis (MAP), I need to get a sigmoidoscopy (even tho no sigmoid, but he can check the illieum for polyps). Also, get an upper endoscopy annually to check for polyps. I trust my gastro, but very nervous about doing the prep..since it will put system into a loose mode.

If you don't mind, I may post an update after a few weeks. There aren't many of us around with a TC.

Thanks again!

Thanks for your comment. Appreciated. And my best to you.

Tried probiotics but they didn't help.

Things I avoid:

Things with added sugar or high fructose corn syrup like non-diet sodas. Also tightly limit use of pancake syrup to minimal amounts.

Some frying fats are very troublesome - the difficulty is that it's "some". Most are OK in moderation, but I do have no-go places based on experience such as KFC. I'm fine with most fast food joints as long as I get senior meals and limit the deep fried stuff - example: I have no trouble with a burger and fries, but fired chicken strips and fries are too much. Ditto with all you can eat fish fries - limit the number of filets and go for a baked potato instead of fries. I does seem the heavier the oil (like peanut oil), the more it causes problems.

I'm checking into the FODMAP diet. It appears I do some of it already, but not all of it - I daily do some milk/dairy and fruits.

My docs do a sigmoidoscopy every 3 years, CT scans/blood work every 6 months now that it's been 41 months post surgery.

I have rectal cancer. They have me on Keytruda every three weeks. I had bowl leakage and that is how I ended up finding out about the tumor. After first treatment the leakage stopped. Had second treatment and it is worse than it was. The fatigue has gotten worse too. Is this normal? Has anyone had same issue?
Thank you,

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.