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Fecal incontinence post rectal/anal cancer
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.
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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".
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1 ReactionHello @labfarm3 and @angielewis1959
I can only imagine how difficult this must be for you to deal with on a regular basis. There is a discussion on Connect titled "How do I eat after digestive tract surgery?"
In this discussion group, there is one post from a member, @jimdiehl, who now works as a flight attendant. Here is a link to a comment about controlling the unexpected fecal incontinence as a result of having Low Anterior Resection Syndrome (LARS) after rectal resection and radiation therapy: https://connect.mayoclinic.org/comment/1350713/
I hope you find something in this member's comment that might be helpful to you.
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1 Reaction@angielewis1959
That sounds useful
Do you take it when necessary,like when you go out or you are taking it regularly
I take 1/2 pill every morning along with an anti diarrheal medicine. I also take a probiotic at night. It seems to help, but I'm still figuring it out.
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2 ReactionsI too had anal cancer. I had radiation and chemotherapy for 6 weeks. The radiation damaged my sphincter muscle and I was left with fecal incontinence. Not only was the pain unbearable, but I spent all my days either in the bathroom or looking for one. My friends were my bidet and Aquaphor. There were days when wearing any clothing was too painful.
Two years ago, almost to the day, I had my colostomy surgery. I don’t know if that is something that has been suggested to you. . When the doctor suggested this surgery to me, I cried right in his office. I was so scared and overwhelmed by the thought. I have named her Libby. She has liberated me from the bathroom! I am free to come and go as I please. There’s a lot to learn and many products out there to choose from.
I wish you the best and I hope this helps in some way.
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1 Reaction@labfarm3, you have most certainly not overshared. This is a place where people can talk frankly about the realities of cancer and its treatments, as well as the emotional side of cancer.
You might find some of these related discussions helpful:
- Colon Cancer: Fecal Incontinence and Reversal Surgery https://connect.mayoclinic.org/discussion/post-reversal-surgery/
- Fecal Incontinence....any remedies? https://connect.mayoclinic.org/discussion/fecal-incontinence-any-remedies/
- Living with long-term bowel side effects post anal cancer treatment https://connect.mayoclinic.org/discussion/living-with-long-term-bowel-side-effects-post-anal-cancer-treatment/
How are you doing today?
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2 ReactionsHi there. First, congrats on the clean PET scan results.
I only recently discovered this forum and I’m so glad I did. I was diagnosed and treated for SCAC in 2008, so I’m 18 years out from treatment (same or similar protocol as you), and knock wood I’ve remained cancer free. I’m 72-years-old, male. Strangely, my issues with fecal incontinence began only about one year ago. Hit me pretty suddenly, which is not to say I haven’t had problems off and on involving underwear soilage and irritation these past 17 years.
It sounds as though you are confronting the problems you’re facing quite well so far. As a “veteran,” what’s been absolutely key for me is finding a good colorectal surgeon who tells it to me straight up, with no sugar-coating of the facts, and offers practical solutions.
I recently had an Anal Monemetry test to measure my sphincture pressures (resting and squeeze). This is important to determine if you’re a good candidate for a sacral nerve stimulation device… you may have discussed this?
My colorectal guy also advised taking low-dose loperamide (2-mgs daily) and this has been invaluable; I had been under the impression you could not take it long-term but apparently it’s okay.
Hang in there, and hope to hear more about your journey as you proceed.
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1 ReactionTalk 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.
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2 ReactionsHello @charlenet1 and welcome to Mayo Clinic Connect.I see that you have worked with a dietician to come up with a eating plan that has helped. That was a great idea. I've also consulted with a dietician after three surgeries of the upper digestive tract.
I would like to invite you to a discussion group where you can share what you have learned and also read how others are coping after digestive tract surgery. Here is a link to the discussion, How Do I Eat After Digestive Tract Surgery:
https://connect.mayoclinic.org/discussion/how-do-i-eat-after-digestive-tract-surgery/
Did the dietician suggest how to include adequate protein to your daily eating plan?
I know exactly what you're going through. I have anal cancer. Most of which was removed. My bowels movement have never been the same. Coming up on three years in Aug. In May of last year I had an inter stem device inserted . You can read up on this and talk to you Dr about this. It's not perfect but it's a better. I still wear depends not sure if I will ever be able to graduate from wearing them. But I'm alive. Some days are worse than others due to what I choose to eat knowing the consequences. No gravy, dairy, spicy food, no chips and queso the list goes on. If I choose to eat these things and I know where I will be spending my time after. I know it can be extremely depressing but I had to learn to just accept things the way they are and move on.