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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'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.
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2 ReactionsHello @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?
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2 Reactions@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?
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2 Reactions@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?
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1 Reaction@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.
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2 Reactions@orend5
I'll be interested in what you learn about that. I understand that certain protocols have to be followed before one of these sophisticated items can be implanted. I have had a problem with urinary incontinence due to a neurological condition and was considering a similar pacemaker device, but first I had to try pelvic floor therapy, then two types of medications, then I had the opportunity to try PTNS (here is a link with information about PTNS: https://www.mayoclinichealthsystem.org/locations/bloomer/services-and-treatments/urology/percutaneous-tibial-nerve-stimulation)
I found that so helpful that I didn't have to move on to the implanted device. I have added a monthly acupuncture treatment, and it has all worked well for me.
I hope you get the help you need.
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