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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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@b2beatacancer
Hi, I read your post and I too have had squamous cell carcinoma of the anal canal. 2rounds of 24-7 chemo, two kinds of meds and 28 rounds of radiation. I’m a year out. It’s hard. I keep a small bag with me with a change of panties, pantyliners and wipes. I’m curious about your fused vagina and bladder. Have they advised help with that? They advised me to use estriol crème inserted at night and dilators to help keep the vagina open. It’s painful but doable. I too have bowel issues, especially at work. Hence the bag of necessities. I can only offer you that little bit of advice as I am still navigating my way through this. I never want to undergo this again and I for one am terrified it will come back. I will pray for your restoration and healing. 🙏🙏❤️❤️
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4 ReactionsFor Squamous Carcinoma of the Anus Stage 2 in 2007, I had a treatment of chemotherapy and extreme daily radiation front and back for six weeks. Several years later the occasional soft and runny bowel movements increased so I was prescribed one tablet of Imodium daily which helped considerably. Ten years later the daily Imodium had to be increased to two tablets. I have checked constantly with doctors who tell me this is okay and will not hurt me. I have met three other people who have confided that they, too, take Imodium daily and one person is a retired nurse. Now that I am in my 80s, I have developed urinary incontinence and constantly have UTIs that antibiotics don't cure. It is thought that even the slightest leakage, such as the mucus from the lining of the colon, carries bacteria that causes a constant urinary tract infection. I am investigating the Medtronic InterStim System and the Axonics Sacral Neuromodulation Therapy System and will be choosing soon to have one of these Systems implanted. Look them up on Google for more information, as I am doing.
I had the same cancer and treatment but mine was Stage 3b in 2009. A few tears later I had a stage 1 sessile polyp removed from my rectum which caused some loss of sphincter control. So I deal with some incontinence issues and have to be careful. I also have tissue shedding. They call is friable tissue I think. I have had several UTI’s also. I am 66. My life is completely controlled by my bowels.
I had a bladder repair surgery several years ago and the surgeon told be to be careful about not allowing my bowels to back up because of the way they lay across my ureters. If they get too heavy they block off the flow out of my kidneys. This gets painful but also causes me painful bladder spasms that feel like an infection but it isn’t. So be careful slowing down your bowels. I don’t use Imodium for that reason. On top of that, I was diagnosed with gastroparesis a couple years ago so I am fearful of Immodium making it worse. Its hard to live with all these things. I feel your struggle.
I had stage 3B rectal cancer 8 years ago. I am experiencing the same issues of my life being controlled by my bowels. Some days are worse than others. I feel for you.
I finished treatment in January, 2022. It is so frustrating because I can be fine for several weeks and then bam, poop myself for no reason. I know where a bathroom is in every store, gas station, office around me. But that still doesn’t matter because sometimes the urgency is real and there’s nothing I can do to stop it from coming out. It is so humiliating. I take Metamucil every day. May try Imodium as well. I’m 72 and have a feeling it won’t be long before I’m in diapers.😫😫
I recently finished radiation for perianal SCC. My bowels have been loose, different, but I never connected the 2 issues until I read this very informative thread. I’ll call my GI today. This site is so helpful. Thank you all.
I’m so sorry you’re going thru all this, and I sympathize greatly. I had my large intestine and rectum removed 43 years ago. I have found the only thing that keeps me from having constant diarrhea is to take a heaping teaspoon of psyllium powder, be it Metamucil or the store brand in about 4-5 ounces of water and swallowed down quickly before it solidifies. I take this 2-3 times a day, and it acts like a sponge and helps to absorb the extra fluid making bowel movements more manageable. Currently I have an rectal/vaginal fistula I am having to learn to live with after 2 failed surgeries, so I understand the uncontrolled diarrhea thing. Taking the psyllium powder helps to make things “firmer” instead of liquid, but it’s still a messy situation. Find you some good pads or briefs that will help contain the leakage until you can get to a restroom. Please try the psyllium powder trick. Hopefully it will help firm things up a bit and make things a little bit more manageable.
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2 Reactions@lhstephenson
Unfortunately I had my lower bowel removed & a colostomy with too much scar tissue for any further surgery w/out life threatening complications. That wouldn’t work w/a bag! Any others with this life-long battle?
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2 ReactionsI posted under this person’s contact by mistake & don’t know how to undo it. Sorry!
@rosiesc