Connect
Living with long-term bowel side effects post anal cancer treatment
I’m an anal cancer survivor (2014–2017) still struggling with severe bowel side effects years later. I’ve tried HBOT, biofeedback, and diet changes, but incontinence continues to affect my daily life and relationships. I’m looking for support, advice, or simply to connect with others who understand.
I am literally in tears. I have needed this for so long. I dealt with anal squamous cell carcinoma from 2014 to 2017. I did one round of chemotherapy, and I can’t remember how many rounds of radiation. I had the full support of my family and fantastic doctors, so I don’t have any complaints, but my life has never been the same. Until today, I had never found a place where I could ask questions (other than to my physician).
It has been 8 years since my last radiation, and I haven’t had a regular bowel movement since. It is always runny. My relationship has essentially been diminished into a roommate situation, because how can it be anything more when I basically have no control of my bowel movements? I can’t eat while I am out of the house unless I have a plan for how to get to the bathroom, and the bathroom must be available — so that rules out most public places. Going to the home of family and friends is embarrassing.
I have undergone several summers of 40 HBOT treatments, I have done two rounds of biofeedback therapy, and I have increased fiber intake. I have my regular colonoscopies done to make sure all remains clear, although the prep for the one last year felt like I was dying. But last night something that has never happened before, happened — I had a runny bowel movement in my sleep. I tried cleaning everything, but I had already moved myself to the couch to be closer to the bathroom... and now the couch is ruined. Everything else is washable, but it doesn’t matter how much I’ve cleaned it, the smell won’t go away, and I am mortified.
I frankly think my partner should find a life with someone else, someone who can provide them intimacy, who can go places with them, who can lead a normal life. It really is exhausting, and today I finally searched high and low until I found this group. And here I am, venting.
I don’t know what help I need. I don’t know what else to do. I have read about SNS but I am afraid of doing something that may interfere with future HBOT or MRIs.
Like
Helpful
HugInterested in more discussions like this? Go to the Colorectal Cancer Support Group.
Connect
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.
-
Like -
Helpful -
Hug
5 ReactionsThank 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.
-
Like -
Helpful -
Hug
4 ReactionsI 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.
-
Like -
Helpful -
Hug
5 Reactionsthank you so much
-
Like -
Helpful -
Hug
2 ReactionsI 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.
-
Like -
Helpful -
Hug
3 Reactions