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

Discussion
Comment receiving replies
Profile picture for b2beatacancer @b2beatacancer

Hello! I just joined this site and read your posts with tears in my eyes. I too had squamous cell carcinoma anal cancer and underwent aggressive radiation and concurrent chemotherapy in 2020. My life has significantly changed since treatment and my quality of life has deteriorated to the point that I was literally isolating, unable to attend social gatherings for fear I would not be able to make it to a restroom in time. After 30+ years as a family law paralegal as well as a church organist, I am no longer able to work, whether in office or remotely, nor had I felt able to sit on the organ bench for that long, or move around as needed to play the foot pedals without a potential accident. I have tried prescription medication as well as OTC pills for diarrhea without much luck despite adjusting my diet significantly and doing everything in my power to improve the situation. I too have become depressed and discouraged. I previously lived a very active life, hiking, swimming, kayaking and traveling as well as attending many family functions and gathering with friends. I have cancelled more times that not after making plans with family and friends, which has frustrated all those I've cancelled on, especially those I've cancelled on multiple times. I recently requested a referral for a consult with a gastro to discuss a potential colostomy (something I refused to consider for the past 5 years), but am to the point that I want my quality of life to improve. I feel so much empathy for you and am sorry you are going through all of this as well. I truly hope that since you posted in 2025, you have found some relief and/or improvement? Had I known this would affect the rest of my life, I may have declined the radiation and chemo and looked at alternative options, if there were any. This is absolutely TMI, (and I type this realizing that I am sharing more than I have in 5 years, as most people have trouble comprehending the issues), and I apologize for that, but in addition to the above, my vagina is fused shut and my bladder is fused to something else, which, has kept me from pursuing any type of dating and/or potential relationship as I feel that no one would be interested in working around any of these issues nor would I feel comfortable asking them to. I keep hoping things will improve with diet changes and medication changes, but the issues continue to be debilitating. My bed is literally 5 steps from the toilet and there have been so many days in the last 5 years when I have been unable to make it in time. It is embarrassing, extremely frustrating, discouraging and just takes the life out of you. Should I find some solution or help to our issues, I will be sure to share. Please stay strong and do what you can to live your life to the fullest each and every day!

Jump to this post


Replies to "Hello! I just joined this site and read your posts with tears in my eyes. I..."

@b2beatacancer

Bag it pronto. The benefits to mobility far outweigh the downsides. I speak from 17 years experience.

@b2beatacancer I'm so sorry to hear this is happening to you. I was having similar problems with accidents and having to cancel social gatherings. Some of this was due to damage from treatment and some of this was from recurrence. I just got my colostomy, it's something I never wanted, but honestly if it improves your quality of life it's a big change but worth it. I'm still new and still healing but once you get the hang of it there are ways to be discreet about having it. I would definitely think about it and look into that option. It's nothing anyone wants, but it's honestly better than being trapped in your own body and giving up the things you love.

@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. 🙏🙏❤️❤️