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

Thank you so much for sharing your experience and for the encouragement. It really helps to hear from someone who understands what these side effects are like. I hadn’t heard of Sawra Maurer before, but I’ll definitely keep her and the Mayo Rochester team in mind as an option. The details you shared about the cream and dilation are especially helpful, and just knowing I’m not alone in this means a lot. Blessings to you as well, and thank you again for taking the time to reach out. I live in the northeast and still have doctors I used to see in Florida, so I’m hoping I can find someone either in the Philadelphia/New Jersey/Delaware area or in the Orlando/Tampa area to help me navigate this alongside my current gastroenterologist and colorectal surgeon. But if it comes down to traveling to Minnesota for care, I’ll do it. At this point, anything is worth a shot.

I am so sorry you are going through this. I can totally relate! I have been dealing with this since they reversed my ileostomy in 2003. I only recently discovered that it has a name, LARS (Lower Anterior Resection Syndrome). There is a Facebook group, that I haven’t had the courage to join yet, which may be helpful for you. There is also a woman on YouTube that talks about her experience with LARS that I found greatly helpful. Recently, I have started taking ½ an Immodium AD each morning and it has helped slow things down. While I still have to go several times a day most of the time, I now have more good days than bad.

I too had anal cancer. I had chemo and radiation for 6 weeks. The radiation left me with fecal incontinence. I spent a year wearing thick pads, constantly looking for or being in the bathroom. It was exhausting to say the least. The day my doctor mentioned having osteomyelitis surgery, I sobbed right in his office. I was so scared and overwhelmed. This October will be 2 years since the surgery. I named my ostomy Libby! She’s liberated me from the bathroom! My life is back and I’m in control.
Is this an option for you?

Hello @gavid and welcome to Mayo Connect. It looks like you have found a lot of encouraging posts and suggestions already. Connect is a great place to open up with your questions and find others who have walked the same path.

You don't mention having pelvic floor therapy, but that might be helpful. I would also like to invite you to a discussion about eating after digestive tract surgery. Here is the link to that discussion, https://connect.mayoclinic.org/discussion/how-do-i-eat-after-digestive-tract-surgery/. In this discussion, you will meet others have posted about post-surgery problems and how they live with them.

You will find the post by @jimdiehl especially helpful as this member has had a similar surgery to yours and has found a way to deal with the long term effects. Here is a link to the post, https://connect.mayoclinic.org/comment/1350713/.

I look forward to hearing from you as you begin the process of finding answers. Will you continue to post?

Thank you, I'll ask my Dr. About the prescription.

I don't mean to sound brutal but, your quality of life could improve with a colostomy.
Just a thoght.
Hang tough.

I am also sorry that you are living with these awful side effects. I had radiation & 1 round of FU chemo (too sick to complete the second round) in April/May of 2023. My life has also changed due to the side effects. I found pelvic floor therapy somewhat helpful. Also, my gastroenterologist discovered that I had constipation that was causing the 10-12 diarrhea bowel movements per day. Apparently only bowel from the small intestine can leak through. It made no sense to me, however taking Linzess early in the morning allows me to purge my bowels, so that I am not running to the bathroom immediately after eating anything (I’m in the bathroom for 1-2hrs daily). It has also greatly reduced the bloating & gas. Fecal incontinence is still a problem, so I did have an SNS implanted. It doesn’t interfere with scans, you just turn it off prior to being scanned, then turn it back on afterward. It isn’t perfect, I still have the occasional accident, but life is much better. I hope you get some relief!

Blessings on your journey
Ill be looking to see how you are doing. !!

I’m also an anal cancer survivor. I have had all the experiences you have shared. Hopefully sharing in my journey will help.

Diagnosed with anal mass after colonoscopy in May 2023. Removed squamous cell carcinoma. Treatments followed for stage 2 anal cancer, 28 days radiation and chemotherapy.
Following treatments had explosive bowel movements for months. Pelvic floor therapy was recommended. Went to therapy at two locations,had 2 different experiences. Changed diet, went gluten free,sugar free,dairy free etc. Learned what helped me. It is so individual what we experience.
I went to an herbalist who specializes in GI issues. He recommended Gut Restorative PRP and several other supplements. Needed to balance my good and bad bacteria after chemotherapy and radiation strips you of both. Had a huge improvement in Bowel movements and regularity.
Continued to have a mucus drainage and soft stool. I would wear women’s light period underwear to prevent leaking. At least I could go out in public again without fear of an accident. Fast forward to September 2024…
Went on vacation and discovered I was not in control , my bowels were. I traveled carrying my emergency kit , unfortunately when in unfamiliar places it was not enough. I vowed when I got home I had to find help.
In April 2025 I had a SNS stimulator implanted. I researched and thought long and hard. It was not an easy process but now after 4 months I’m 70 to 80% improved. Still improving everyday. Also it does not interfere with other treatments. I have had MRI and PET Scans.
If you have any questions please feel free to reach out and ask. This forum has helped me immensely.

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.