Living with long-term bowel side effects post anal cancer treatment

@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.

@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?

@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?

Hello @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?

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.

@jimdiehl
Hello jimdiehl,
Thank you for your writing about six days ago: You appear to be well adjusted to your conditions. My colon cancer experience was in 1999, were not that far off in experiences. I appreciated your sharing and throughout it all, you just kept going. What a brave approach to a life changing challenge. And, by sharing this story you have encouraged others besides myself to just keep adapting to the constant changes. I also participated in ostomy groups and found much support throughout those early times.
But being a flight attendent is courageous: I no longer fly anywhere; the overall process seems so complicated and crowded all the time. I, we, my gal and I, explore our states on three wheeled trikes, mostly in Florida and my status as an ostomate has never been an issue. Just keep going my friend, and keep sharing whenever you can. Helping others through encouraging responses is such a wonderfull thing about our connect site. Best to you and yours.
Jofree

Thank you so much. Just being able to talk about this and knowing I am not on an island by myself going through it has been such a help. I see my colorectal surgeon next month and I will ask about SNS. She has strongly recommended it, but I was afraid, afraid of choosing something that would only mitigate the problem rather than cure it, something that would be lifelong instead of restorative or therapeutic. I realize now that this thinking is part of the stigma, and I am not helping myself or anyone else by holding onto it.

As a rectal cancer survivor, my surgery was in 1986. I had a diverting colostomy for three months before my colon was re-attached. I had a double advantage in that my step father had a permanent colostomy for the last 20 years due to his rectal cancer surgery. From my own experience and from watching how the colostomy had changed his life style, I concluded that I understood colostomy. I have managed bowel issues for 40 years - mainly unpredictable, often short notice, sometimes no notice diarrhea. It was not an unmanageable issue until I became a flight attendant 10 years ago. I could not tolerate unpredictable bathroom events while working with passengers and crew members in the cabin of an airliner. Several years ago, I discovered over the counter Immodium (generic Loperamide). One 2 mg pill after the onset of diarrhea generally stops the diarrhea. It basically shuts down my large intestine. I have to be careful to restart my large intestine motility if it does not re start within two days. If not, I am subject to developing a small bowel obstruction (SBO) (likely due to scar tissue) in my small intestine. I have had five SBOs in the two years using loperamide, one requiring hospitalization and a naso gastric suction tube to relieve it. However, I find that as a general statement, I can avoid unpredictable diarrhea with loperamide or very selective eating of small amounts of low residue food more frequently and occasional use of loperamide. My goal is to avoid unpredictable bathroom events as well as SBOs and I am making some progress. I have also tried pelvic floor therapy which may have helped (cannot really identify a change) and will also consider sacral nerve stimulation if needed.

My colostomy experience was not bad, and I would go back to a permanent colostomy if my existing management practices fail. While on a colostomy i participated in ostomy user groups at Fairfax Inova and found them very supportive.