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

I'm sorry to hear about your challenges, and I can surely relate. I was treated for SAC (T2, NO, MO). Although it was early-ish stage, I was told by the care team that I had to undergo the NIGRO protocol of chemoradiation regardless.

Like you, I had a change in my bowel function thereafter, but nothing quite as severe as you describe. Recently, about one year ago, I started experiencing fecal incontinence, which I had not experienced (at least not severely) in the 17 years post-treatment. My quality of life has similarly taken a nosedive. My colorectal surgeon explained that this can start happening even decades after treatment.

I am scheduled to undergo an Anal Manometry test to evaluate my sphincter function and pelvic floor strength. We'll see what that entails. My doctor mentioned I may be a candidate for a sacral nerve stimulator device––sort of like a pacemaker for the sphincter muscles. He says for many patients like us it's a game changer.

Hello @orend5 and welcome to Mayo Clinic Connect. I see that you have undergone the NIGRO protocol. I understand that this is a pre-surgery treatment. Have you had surgery, or is it planned for the future?

@hopeful33250 Hi there. The protocol I underwent was not pre-surgery. As I mentioned above, my cancer was fairly early stage, with no lymp node or metastatic involvement. I did have surgery to excise the T2 tumor prior to the chemoradiation.

I suppose it depends on the staging and extent of the tumor whether NIGRO is followed pre- or post-surgery. My treatment was 18 years ago, so perhaps there have been changes to the protocol?

@orend5
As your treatment was 18 years ago, it appears that you have not had a recurrence. Is my understanding correct? I would be interested in hearing more about the sacral nerve stimulator device. Will that be something you will consider after the Anal Manometry test?

@hopeful33250 That is correct, I have not had a recurrence. I consider myself lucky in that regard. I completed the Anal Manometry, and the results were essentially: Low resting sphincter pressure with normal squeeze pressure, so both bad and good results, if you will.

I've yet to have a follow up with my colorectal surgeon regarding the results, but based on what I learned during my recent visit, I'll probably try biofeedback and pelvic floor therapy before moving on to the device; though we'll see what's recommended in my case based on my results. Maybe the bad "resting" pressure results will sway toward going straight to the sacral nerve stimulator. We'll see.

Hello! I just joined this site and read your posts with tears in my eyes. I too had squamous cell carcinoma anal cancer and underwent aggressive radiation and concurrent chemotherapy in 2020. My life has significantly changed since treatment and my quality of life has deteriorated to the point that I was literally isolating, unable to attend social gatherings for fear I would not be able to make it to a restroom in time. After 30+ years as a family law paralegal as well as a church organist, I am no longer able to work, whether in office or remotely, nor had I felt able to sit on the organ bench for that long, or move around as needed to play the foot pedals without a potential accident. I have tried prescription medication as well as OTC pills for diarrhea without much luck despite adjusting my diet significantly and doing everything in my power to improve the situation. I too have become depressed and discouraged. I previously lived a very active life, hiking, swimming, kayaking and traveling as well as attending many family functions and gathering with friends. I have cancelled more times that not after making plans with family and friends, which has frustrated all those I've cancelled on, especially those I've cancelled on multiple times. I recently requested a referral for a consult with a gastro to discuss a potential colostomy (something I refused to consider for the past 5 years), but am to the point that I want my quality of life to improve. I feel so much empathy for you and am sorry you are going through all of this as well. I truly hope that since you posted in 2025, you have found some relief and/or improvement? Had I known this would affect the rest of my life, I may have declined the radiation and chemo and looked at alternative options, if there were any. This is absolutely TMI, (and I type this realizing that I am sharing more than I have in 5 years, as most people have trouble comprehending the issues), and I apologize for that, but in addition to the above, my vagina is fused shut and my bladder is fused to something else, which, has kept me from pursuing any type of dating and/or potential relationship as I feel that no one would be interested in working around any of these issues nor would I feel comfortable asking them to. I keep hoping things will improve with diet changes and medication changes, but the issues continue to be debilitating. My bed is literally 5 steps from the toilet and there have been so many days in the last 5 years when I have been unable to make it in time. It is embarrassing, extremely frustrating, discouraging and just takes the life out of you. Should I find some solution or help to our issues, I will be sure to share. Please stay strong and do what you can to live your life to the fullest each and every day!

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.

Hello! I just joined this site and read your posts with tears in my eyes. I too had squamous cell carcinoma anal cancer and underwent aggressive radiation and concurrent chemotherapy in 2020. My life has significantly changed since treatment and my quality of life has deteriorated to the point that I was literally isolating, unable to attend social gatherings for fear I would not be able to make it to a restroom in time. After 30+ years as a family law paralegal as well as a church organist, I am no longer able to work, whether in office or remotely, nor had I felt able to sit on the organ bench for that long, or move around as needed to play the foot pedals without a potential accident. I have tried prescription medication as well as OTC pills for diarrhea without much luck despite adjusting my diet significantly and doing everything in my power to improve the situation. I too have become depressed and discouraged. I previously lived a very active life, hiking, swimming, kayaking and traveling as well as attending many family functions and gathering with friends. I have cancelled more times that not after making plans with family and friends, which has frustrated all those I've cancelled on, especially those I've cancelled on multiple times. I recently requested a referral for a consult with a gastro to discuss a potential colostomy (something I refused to consider for the past 5 years), but am to the point that I want my quality of life to improve. I feel so much empathy for you and am sorry you are going through all of this as well. I truly hope that since you posted in 2025, you have found some relief and/or improvement? Had I known this would affect the rest of my life, I may have declined the radiation and chemo and looked at alternative options, if there were any. This is absolutely TMI, (and I type this realizing that I am sharing more than I have in 5 years, as most people have trouble comprehending the issues), and I apologize for that, but in addition to the above, my vagina is fused shut and my bladder is fused to something else, which, has kept me from pursuing any type of dating and/or potential relationship as I feel that no one would be interested in working around any of these issues nor would I feel comfortable asking them to. I keep hoping things will improve with diet changes and medication changes, but the issues continue to be debilitating. My bed is literally 5 steps from the toilet and there have been so many days in the last 5 years when I have been unable to make it in time. It is embarrassing, extremely frustrating, discouraging and just takes the life out of you. Should I find some solution or help to our issues, I will be sure to share. Please stay strong and do what you can to live your life to the fullest each and every day!