Fecal incontinence post rectal/anal cancer

Hello out there. I’m a 60 year old male who was diagnosed with squamous cell anal/rectal cancer 10/21/24. I went through two rounds of 5-FU/mitomycin chemo and six weeks of radiation from mid November to the end of December last year. I was hospitalized in January for a month right after finishing radiation treatment for an infection and pain control, and it’s been a slow and steady recovery overall.

Fast forward to July of this year. Repeat PET scan…cancer is gone! Primary oncologist tells me he can’t say the word ‘cured’ until I’m 5 years out cancer-free, but he’s quite confident it won’t be back. I should be elated, right? Well.. the overall pain and neuropathy persist, I’m still on significant amounts of pain medication, and the principle reason for this post; incontinence.

I’ve been wearing Depends for months, have been seeing a pelvic floor PT provider every six weeks for exercises, have tried increasing fiber intake my diet, I’m trying to balance meds, and I’ve experienced intermittent improvement and relapses. Currently, I’m in a setback with increased frequency of incontinence, increased cramping, and occasion bleeding. I’m just frustrated and depressed, which in turn affects my motivation to keep up with PT, diet, and social interactions. This has been happening to varying degrees for 10 months.

I guess what is weighing heavily on my mind is whether there is a chance for improvement or resolution of my issues with incontinence. If I continue to put in the time, the work, all the effort, is continence even possible? There are several factors at play with me right now. Because of the depression and frustration, I haven’t been committed to my PT exercises, my diet has been horrible, and I’ve isolated myself due to the embarrassment of it all.

I would love to hear about some possible success stories out there, or others’ experience that are similar to mine and what direction their journeys have taken them. I’ve restarted psychotherapy to try to address the depression and isolation, and I’m seeing my cancer team for my three month follow up following my cancer-free declaration next week.

Any advice? Any important questions or concerns I should bring up with my treatment team? The last conversation with one of my doctors included the evil ‘O’ word (ostomy). I would prefer to avoid that route, but maybe I’m not looking at that option the way I should.

Right now, the incontinence is limiting my social interactions, dating is out of the question, traveling for more than an hour or two by car is avoided, forget flights of that duration, it’s really affecting my every day. I just want to function somewhat normally again without the stress of wondering if I’ll have enough bowel control to be out in public without soiling myself and the embarrassment surrounding that. I sometimes cut errands or activities short to head home for ‘clean up’, I carry a ‘clean up’ kit in a shoulder sling bag wherever I go so that I can clean up/change if necessary when I’m out and about.

My apologies if I have ‘over shared’. This is my current reality, and I’m just reaching out to see if there are others going through or have been through similar circumstances, and what they have done to improve these issues. I’m hoping I’m not the only one going through all of this, and I’m anxious to hear from similarly situated folks to learn what their experiences have been and what interventions have done for them.

Thanks so much for your time.