Colectomy

I did not have a colectomy, but I have the uncontrolled poops from pelvic radiation. My treatments ended last October so it has been seven months. Goes from constipation, tenesmus, to diarrhea. Wash, rinse repeat on no set schedule. I think I find the perfect food combination, then my body wants a change.

There is also a mental aspect- I am at the stage where I find it challenging but am grateful the cancer is gone and can be a bit cheeky about it; but there are times when I backslide to the “why me, what did I do wrong” where I get down and wonder why I did the treatments. Not to mention the embarrassment and social isolation and grumpiness.

Two useful things (at least temporarily) are pelvic floor exercises, therapy if you are able and I just started lomotil (for the current diarrhea phase).

Period underwear are useful for containment and dignity.

Sorry I prefer the poops to bowel movements, but an important point is that you have to be able to explain your symptoms to your medical staff. As an aside, does anyone know of a post-cancer digestion specialist? I am exploring the possibility of assembling a medical group that includes specialists- psychologists, nutritionalists, physical therapists, gastroenterologists only for post cancer people’s.

Hi, I'm sorry that you had to go through that, but I'm right there with you. I had a colectomy in March 2024. I also did not end up with a bag, but they took my entire colon. My initial issue was a sleepy bowel which put me back in the hospital for a few days, after that no problems except loose or runny bowels. I'm pretty sure it has to do with diet, plus not gaving a colon, the stool doesn't really get a chance to solidify that well. Sugarized foods go through me fairly quick, so I try and stay away from them because I am also diabetic. I used Metamucil for awhile, not a whole lot of difference. Then my GI doctor said to try Citrucel and it seems to work a little better. But, I average getting up about 3 times at night and an ungodly amount of times during the day. Although there are 5 in this househild, I had to have my septic tank pumped after just 11 months because of the increase in primarily my bowel issues. I have been primarily housebound except if I go anywhere I need to know where the bathrooms are, porta pottys, rest areas, McDonalds, etc.

Thanks for responding to me. This is pretty disheartening. Having my whole colon removed, I'm having the same issue. I recently retired, and I was really looking forward to doing some traveling (this is my second primary cancer - I had breast cancer 7 years ago and now colon). After two major cancers, I'm ready to cross some things off my bucket list, but it's really difficult to stray far from home when you need to use the restroom all the time. I take Benefiber every 8 hours, but I don't see much of a difference. I've changed my diet, but if I eat out, i'm running for the bathroom too, and I HATE using public restrooms. I really hoped there was an answer......

My surgeon told me I would have loose or runny bowels the rest of my life, and so far she's absolutely correct. Colon cancer was also my second cancer with prostate cancer being my first in 2007. For prostate cancer I had a radical prostatectomy, and 6 months later I had to have radiation (39 treatments), along with lupron injections. After all that, it left me 100% incontinent, but it is controlled with an artificial device.

I wish I could provide you with a cure-all, but I haven't found it myself yet, and per my surgeon and oncologist, I probably never will. It stinks because my life (which sounds a lot like yours) is controlled by the bathroom. Even something as simple as going to the grocery store, I have to know where the bathroom is. I can travel pulling my travel trailer because I'm towing my bathroom! I'm scared to fly though as access to a toilet can be sketchy, but hopefully at some point I can get past that fear. Obviously our quality of life is greatly impacted.

Don’t forget OTs who can help with pelvic floor dysfunction. There are some amazing pelvic floor OTs.

Is an ostomy an option?

I had severe ulcerative colitis that put me in the same bathroom position. I vehemently fought against a colectomy for several years. And in fact finally found a drug that worked so that I went from 10+ /day to 2 or 3. At last a life!
But then I developed colon cancer.I always thought I would get a j-pouch if I had a colectomy. But I learned I would probably be back to something like 8+ /day with only weak control.
So, in the end I chose an end ileostomy. This leaves me with emptying an ostomy bag 6-8 /day. (A colostomy would be less frequent.)
It certainly was not my desired outcome, but at least I have control over when I go to the bathroom, and don't have to cope with a 100 yd sprint on a moments notice that
may not be in time. Many people with ostomies live a very full, relatively normal life