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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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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
It’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
Thanks for your explanation. After reading your experience, I am thankful the my sigmoid colon resection was minimal leaving me with a descending colon. After my recent hospital discharge for a small bowel obstruction (my first hospitalization for SBO in 28 years), I adopted a regularity regimen suggested by a friend: Oatmeal bowl daily mixed with Chia seeds and cracked walnuts. It has helped my stool formation and reduced by not eliminated diarrhea. She also recommend about 72 ounces of water daily which I have not yet adopted.
I had the whole of sigmoid and rectum removed The descending colon was brought down to form a J loop and anal canal was attached to the base of the J.So as per physiology both the storage areas for the stools has been removed.So the descending colon which has an interrupted movement unlike the small bowel keeps emptying once in a few minutes depending on the consistency of the stools.As high fibre diet is essential for good gut health the evacuation is more.The large bowel movement is more at night and stools come into storage to evacuate in the mornings,which is our routine habit since child hood.So fragmentation frequency and the fibrosis of anal canal following radiation which has produced incontinence are all creating the challenge.Anyway I have learnt to live with it.Maybe more time to read while the others sleep and read in peace.I was a practicing Obstetrician for 45 years,so God trained me for so many years with interrupted sleep and got me ready for this ultimate phase of life.Thanks to HIM who knew what awaited me.
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1 ReactionI have no experience with a colostomy or cancer, but what the people describe seem much worse to me. I know someone with a colostomy and I belief he manages it well. Everyone is different. It seems they are not able to deal with incontinence.
My cancer was rectal which included a partial sigmoid colon resection along with the rectum and radiation. A classic case of low anterior resection syndrome. I try to limit my movements to what is in the descending colon but am not very successful. I am surprised that you are not getting more uninterrupted sleep. Is this because of unpredictable diarrhea bouts?
The daily maintenance for a colostomy is significant. I only had a colostomy for 90 days but watched my step-father deal daily with his for 30 years. Colostomy would not be my first choice if I could deal with incontinence with nutrition, food intake schedule, over the counter medications, pelvic floor exercises and planning, and when all else fails an occasion Depends
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1 ReactionNo
I only take Loperabmie when I expect uncontrollable diarrhea. By uncontrollable, I mean my stool quick goes from firm, to soft, to loose, to liquid. By the time it gets to liquid it is uncontrollable because my spincther cannot stop it even though I do pelvic floor strengthening exercises daily. (My resection was rectum/sigmoid colon)
Going from firm to liquid over a short period of time tells me that my entire large intestine is emptying. So, if I arise on the morning of an airline trip and have diarrhea, I take loperamide immediately to stop colonic motility.
I have been out of the hospital for one month today after a small bowel obstruction. I only requested one loperamide in the hospital to stop the diarrhea and have not taken one since though I have been home.
Taking loperamide creates a risk that one needs to be wary of. It basically shuts off the motility in the large intestine which can lead to significant constipation after several days. This is what created my recent Small Bowel Obstruction (SBO). My planned remedy is I will start taking Milk of Magnesia (Dulcolax Liquid) if I have not had a bowel movement for three days after taking a loperamide.
I have not been admitted for a SBO for 28 years before last month, so my track record of avoiding a stoppage is good. But, my experience has shown that I need to fine tune my diarrhea avoidance strategy.
I find the 2mg loperamide tablet, the smallest dose, to be very effective. It you take it, keep in mind that you may need a laxative to start large intestine motility again before constitpation sets in. This last month, I have added a suggested "regularity regimen" consisting of daily oatmeal, with chia seeds, and whole and cracked walnuts. My regularity has improved with little loose stool and no diarrhea.
Thanks for asking. I was looking for an opportunity to summarize my last month.
Why couldn't these people have a colostomy as a fix for the incontinence?
Do you take Loperamide every day.