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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.
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@colleenjoan5, welcome. What did the doctor suggest for strengthening the anal sphincter muscle? Did you work with a physical therapist to do that?
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1 Reaction@doxiemimi10, welcome. You're so right that is it a personal preference. I think the unknown is scary too. It helps to hear from people who are living well with an ostomy. How long have you had a colostomy? What do you wish you had known then that you know now?
@salsify I have these issues 35 yrs after radiation. I take immodium which was working. But now I take more and more and nothing is working. Good luck to find a solution
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1 Reaction@gavid I had cervix cancer 35 yrs ago...I just found out through colonoscopy foot and half of burnt bowel from 30 radiation treatments.I was taking immodium which kinda worked but now I just have liquid stool. Don't know what to try next..good luck to everyone with this issue
I just found this site and am blown away at the responses. Blown away because it never really occurred to me that so many others are dealing with the same issues as I am. I was diagnosed in October 2013 with anal cancer. I underwent 8 weeks of radiation and chemo, side by side (chemo was oral other than the first treatment). I remain cancer free (at least there. I was diagnosed with lung cancer last Dec and had surgery in February). The bowel issues have been ongoing since 2013. I try to manage them with all the same things other writers note. Fibre, Imodium, when to eat, knowing I need access in the mornings to a bathroom immediately, watching what I eat or drink when out, especially early in the day. One doctor told me to 'strengthen' the anal sphincter muscle. Made no difference. Incontinence has been an issue. It does govern my life and what I do for a good part of the day. It's not that easy to 'share' with people. When I travel I pretty much don't eat until I know we are stopped for a length of time and I have access to a washroom. No doctor yet has any reasonable answer for this. I take Imodium pretty much every day. It helps. Most days I remember how fortunate I am to be here. And some days are just plain frustrating and discouraging. I keep trying different combos of meds and foods.
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3 ReactionsI just want to let you know you are certainly not alone. I was sitting on the porcelain throne wondering if I was the only person who still has life affecting bowel issues 10 years after chemo radiation treatment. It isnt as bad as it was 9 years ago, but I still try hard not to schedule anything before noon - or at least 11 am. I do wonder if anyone else spends a lot of time on the toilet when they might be "done" for the moment because they know as soon as they get cleaned up and ready to do something... they will have to go through it again. Across the holidays I must have eaten too many things that upset the precarious balance I can sometimes maintain. I have to remind myself that I am lucky - at least I am cancer-free...
Hoping you find relief -
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3 Reactions@jimdiehl
I have a colostomy and would 100% rather deal with it rather than incontinence! This is
definitely a personal preference situation. Though I can reasonably guess none of us would choose any of these issues!
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1 Reaction@tsch those can break in the middle of the night too. nothing is perfect. Better to not have an operation if it is not necessary.
I just wanted to reach out and say you are not alone. I was diagnosed in 2014 as well, chemo and radiation. I am at a loss at this point how to manage fecal incontinence as well. I experience all the same issues you are having. I wear depends at night if I have any inclining of a tummy rumbling as I have woken up with a bowel movement in my sleep as well. I manage mostly by diet control and fasting when I need to leave the house. I also eat at the same time and to TRY to make bowel movements as predictable as possible. I fast till noon, then have a daily high protein smoothie with lots of healthy ingredients and the routine helps. I have zero control and can be is the bathroom and still not make it to the toilet in time. My sensation to go is only in stomach so hard to manage. Kaopectate liquid sometimes calms the tummy after dinner. Loperamide only helps minimally. Same with colonoscopy preps! I thought I would die! I have done multiple and will go every 10 minutes right up till they put me under , it is a nightmare. I found if I cut down on the prep and fasted the day before it helps. We shouldn’t be given the regular prep amount. Does not seem like there is a solution for us… I will look into the diarrhea transcript and the Anal ca foundation too take care
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2 ReactionsIt’s been a year from my last radiation treatment and my bowels is never the same I’ve tried pelvic floor therapy and it help some I try to increase my fiber to increase the bulk. But I never know. My husband passed away 2weeks before I got my test results so I been thinking a lot of mine has been emotional stress cause the drs never told me to expect all this bowel problems