Living with long-term bowel side effects post anal cancer treatment

I don’t have experience with this condition, but wanted to welcome you to the site and offer encouragement. I believe you will hear from others who have similar experiences. It sounds like so much to handle and you are doing a great job. So sorry you’re having these issues. I hope you’ll get support here and find some options to provide you relief from your symptoms.

thank you so much

I am so sorry that your bowel movement issues have continued for so long. I completed chemo (2 founds of 5fu) and radiation (30 rounds) for squamous cell anal cancer in early June 2025;and continue to have the same bowel movement issues that were my only symptom for several years prior to diagnosis. My issues are much more manageable as I continue to have 3 to 6 unusual bm’s every AM. I just make all appointments in the PM (ok for a retiree). My cancer involved the internal anal sphincter so I’m happy results are not worse.

Did you doctors tell you that your internal or external sphincter muscles were involved? Sphincter damage could lead to incontinence.

Based on National Institue of health studies regarding cancer treatment and probiotics, I purchased a specific type of acidophilus and bifo probiotics from Amazon. I feel that chemo that kills everything (good and bad), so there is a need to build back good things in intestinal tract that may have been destroyed by treatment. I continue to take extra probiotics and eat healthy as I can still feel chemo effects. Can your doctors refer you to a nutritionist who may be able to test for missing nutrients or help you rebuild your internal micro biome?

I think everyone’s bodies react differently to cancer and treatments. I hope others have some helpful suggestions for you.

Thank you so much for sharing your experience. Like you, I also dealt with similar bowel issues before treatment, but the urgency and frequency definitely became much worse afterward. Both my gastroenterologist and colorectal surgeon have recommended things like Citrucel and a handful of other options. They help a little, but only to a very small degree.

Unfortunately, I have not had anything close to a regular schedule in years. On top of that, anything that affects my anxiety or mood immediately shows up in my stomach. It feels like a vicious cycle. The discomfort and embarrassment feed the anxiety, and then the anxiety makes the symptoms worse, so you are stuck in a loop.

I tried probiotics for a while, but the cost really added up and I was not seeing much difference, so I stopped. These days I eat relatively well. I have cut out eating out almost entirely and try to avoid processed foods, but I still deal with constant gas and very loose watery bowel movements. On the days they are a little more formed, still nothing close to solid but closer, I will end up going three or four times within a couple of hours because I never feel like I am completely empty.

Most days, I dread the gas I cannot control, knowing it may eventually soil my underwear. For a while wiping only made things worse, so I switched to a bidet, but that also backfired. It felt like water was getting in and then slowly leaking out afterward. I cannot believe I am even saying all of this, because I have been holding it in for so many years. It feels gross, it makes you feel raw and exposed. And if I am oversharing, I apologize, but it has been bottled up for so long that letting it out almost feels like a release.

I am a man and I have tried cutting a woman's pad to make it fit. I have tried tampons. Adult diapers are far too bulky to go out in public. I have not worn a light colored pair of pants in almost a decade. At times it just feels insurmountable.

I am so sorry to hear about your struggle with post treatment side effects. I also am an anal cancer survivor (2020) and experience incontinence issues. I know some survivors who have had long term diarrhea and they have used Lomotil to control it so they can go out and about. Perhaps this would help if you haven’t tried it as of yet. The Anal Cancer Foundation is having a virtual anal cancer patient summit on October 18 to connect thrivers, caregivers and experts. You might be able to get some answers there. Also, when I started treatment there was a diarrhea management video transcript from MD Anderson Cancer Center that I printed out. Type in “Treating Diarrhea Video Transcript” and it should come up. It might have some useful info. I know this seems like a lonely road but there are a lot of us walking with you. I hope this helps.

I’m so sorry to hear about the challenges you’ve been facing since your treatment. It’s incredibly brave that you’ve shared this, and you’re definitely not alone in navigating these struggles. The ongoing bowel incontinence after such a journey can feel isolating, but there are communities and resources that might offer some comfort and practical support. Connecting with others who’ve walked a similar path, like through peer support programs, could provide valuable insights and understanding.It’s understandable to feel overwhelmed, especially with the recent incident, but your efforts with HBOT, biofeedback, and diet changes show remarkable resilience. For options like Sacral Nerve Stimulation (SNS), it might be worth discussing with your doctor to weigh the benefits against any potential interference with future treatments—your concerns about HBOT or MRIs are valid and worth exploring thoroughly. Pelvic floor therapy or additional dietary adjustments tailored to your needs might also be worth considering, and a continence nurse could offer personalized guidance.Your feelings about your relationship are heavy, but open communication with your partner might help them understand your perspective and strengthen your bond. Take it one step at a time, and know that venting here is a step toward finding the support you deserve. If you’d like, I can help you draft questions for your next doctor’s visit or look into specific support groups.Wishing you strength

Mayo Rochester Gastrenterology
Sawra Maurer PA has saved me after anal cancer treatment
Hope you can see her.
I have post radiation side effects too .. have to wear Depends. 1 yr post treatment. . Sawra gave Nefedipine compounded cream for fissure and helped w self dilation that for rectal canal stenosis . Im wondering if the internal musculature isnt working properly for u . Radiation damage
Hope maybe you can see her
Wishing you the best snd all encouragement. You are not alone
Blessings on the journey

So happy that so many of my “colleagues” are willing to share their experiences. I’m still in the “honeymoon phase” and hoped that bowel movements would return to normal after 6 month post transitional phase. All of your shared comments will help me to adjust my expectations without worrying that cancer must not be gone. I always wonder what has changed in my body that causes my fecal matter to continue to want to adjust its size and consistency so it can pass through my radiated anus. I forgot about the gas issues (all day) until someone else mentioned it. Thank you to everyone for sharing!

You bring up something else that, thankfully, I worry less about now, though as you mentioned, it was a concern for me in the beginning too. I used to think that having no real change in bowel movements, or the frequent mucous soiling in my underwear, meant the cancer wasn’t fully gone. Learning that this isn’t the case has been such a relief. In a strange way, I’ve even found it fascinating how the body adapts and, as you said, how fecal matter keeps adjusting its size and consistency so it can pass through my radiated anus. I’m truly glad you didn’t wait as long as I did to seek out support, because in just a matter of days I already feel understood and like a huge weight has been lifted. Family can only understand so much, and my partner often phrases things in a way that makes it sound like I’m at fault—for not trying this or that, for eating this or that, or for not doing something differently. When he doesn’t understand that all of this is beyond my control, I end up speaking less about it, and that silence builds into frustration and resentment.

Thank you so much! I looked it up and easily found the link with info about the virtual summit, and I also came across the MD Anderson “Treating Diarrhea” transcript you mentioned. Both are super helpful, and I really appreciate you sharing them. It feels good to have these kinds of resources at hand.