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

Really a great challenge which all of us are forced to cope up with.Though mine was a rectal cancer which was placed in the lower end ,the radiation was almost similar to anal cancer and the after effects are similar.As it is a descending colon J pouch the fragmentation and frequency made me give up my active Ob Gyn practice.The initial years there was pain,irritation and burning sensation of the radiated area.Now that has reduced as it is seventh year in remission.As you said my bed is close to the toilet.Inspite of it accidents do happen frequently.Being on a diaper 24/7 is making the area sore. Like babies , knowingly it is very difficult to empty the bowel and continue to work or sleep.Most of the nights I am in and out of toilet It is seven years since I have slept continuously for an hour..
Maybe it is the price to pay for being alive but I count my blessing as,having a toilet close to the bed room with 24 hours water supply .Imagine living in that part of the world which has no toilets or water..Only this thought has motivated me to accept my challenges with peace and gratitude.
Only counting our blessings and practicing gratitude helps to live in a reasonable level of peace of mind,otherwise I would have gone insane by sitting at home with no professional work.
We are all there to share your concerns.Nobody can take your pain but we are willing to hold your hands virtually and pass on our strength to you through thoughts,words and prayers.God bless

My heart hurts for you. Because of some bowel issues, I have been home so much more this last year, but am not dealing with the level you are having to put up with. And troubling issues that don't improve or can't be resolved and last and last really takes its toll on us emotionally. I'm so sorry. I wanted to share something I hope will be helpful. The last year of my brother's life he was having accidents a lot too in his home. On the couch, on the carpet, etc. You know. I had to clean it up for him. The first time I had limited time to shop for something to use and stopped at a Home Depot and bought some cleaner that is used when pets have accidents. My goodness! That worked SO well. And it took the smell out right away and it hasn't returned. I can't remember what pet cleaner I purchased? (I remember it was liquid). But I think any would work well? (if you haven't already tried) I'm a cancer survivor too and it really helps to have people to share with. Keep sharing your story. It is important for us as well as you. Take care.

The Anal Cancer Foundation has a Facebook page with a wealth of information!

I had my last radiation 6/19/24 then on 6/26 I was in the hospital they put some kind wash on my burns that gave me 4 th degree burns in my bottom. Was in bed for 2 1/1 months had to do pelvic floor treatment and it help some. I don’t have any muscle control and a mixture of diarrhea and soft stool. Raise my fiber intake and nothing seems to help
I had my first asleep bowel movement the other day.
Not sure what SNS treatment is , no one has said anything to me about that
I’m going to go see a gastroenterologist next month
I don’t like how this has turned out Im like you I don’t want go out an eat are go places
Not. Comfortable with the outcome issues

Do you take loperamide every day.

Do you take Loperamide every day.

Why couldn't these people have a colostomy as a fix for the incontinence?

No
I only take Loperabmie when I expect uncontrollable diarrhea. By uncontrollable, I mean my stool quick goes from firm, to soft, to loose, to liquid. By the time it gets to liquid it is uncontrollable because my spincther cannot stop it even though I do pelvic floor strengthening exercises daily. (My resection was rectum/sigmoid colon)

Going from firm to liquid over a short period of time tells me that my entire large intestine is emptying. So, if I arise on the morning of an airline trip and have diarrhea, I take loperamide immediately to stop colonic motility.

I have been out of the hospital for one month today after a small bowel obstruction. I only requested one loperamide in the hospital to stop the diarrhea and have not taken one since though I have been home.

Taking loperamide creates a risk that one needs to be wary of. It basically shuts off the motility in the large intestine which can lead to significant constipation after several days. This is what created my recent Small Bowel Obstruction (SBO). My planned remedy is I will start taking Milk of Magnesia (Dulcolax Liquid) if I have not had a bowel movement for three days after taking a loperamide.

I have not been admitted for a SBO for 28 years before last month, so my track record of avoiding a stoppage is good. But, my experience has shown that I need to fine tune my diarrhea avoidance strategy.

I find the 2mg loperamide tablet, the smallest dose, to be very effective. It you take it, keep in mind that you may need a laxative to start large intestine motility again before constitpation sets in. This last month, I have added a suggested "regularity regimen" consisting of daily oatmeal, with chia seeds, and whole and cracked walnuts. My regularity has improved with little loose stool and no diarrhea.

Thanks for asking. I was looking for an opportunity to summarize my last month.

The daily maintenance for a colostomy is significant. I only had a colostomy for 90 days but watched my step-father deal daily with his for 30 years. Colostomy would not be my first choice if I could deal with incontinence with nutrition, food intake schedule, over the counter medications, pelvic floor exercises and planning, and when all else fails an occasion Depends

My cancer was rectal which included a partial sigmoid colon resection along with the rectum and radiation. A classic case of low anterior resection syndrome. I try to limit my movements to what is in the descending colon but am not very successful. I am surprised that you are not getting more uninterrupted sleep. Is this because of unpredictable diarrhea bouts?