Hi Kay - no things have not really improved for me since June 1999. I was told I comprise a very small % of former colon cancer patients who had resections. My tumor was barely inside, my surgeon removed 90% of my sigmoid and then 15 inches above that point. I was reconnected 8 weeks after my temporary colostomy was reversed. That is when all the "fun" began for me. My original surgeon moved out of state, his partner took over my care and was hoping I'd eventually have 6 -8 bm's per day. That never happened. He then referred to another colorectal surgeon in my city who he said was doing great things with exercises, diet, etc. Switched to her and she thoroughly examined my lower colon (she even has a very different exam table, they elevate your rear to her height, etc.). I had to do an enema before my exam. She asked me to get dressed after my exam and then proceeded to show me a diagram of a normal, intact colon and sigmoid. She then hand drew my newly created lower colon. Circling my new sigmoid. A pulled down part of the colon, that cannot swell, not like the sigmoid can swell. She said - this is why you cannot retain stool for very long, you have nowhere internally for stool to collect and ideally be released once or twice a day (normal person). I burst into tears. She sighed and even said outloud - sometimes I wonder if we should even be doing these types of surgeries (removing sigmoids)? Rhetorical question of course. She then said - 20 years ago, you would have had a permanent colostomy, end of discussion. So once I stopped crying, she said - there are some things we can try, emphasis was on try. She suggested I "retrain" my bowels. I was to wake up and eat a high fiber diet, she suggested bran cereal, a cup of coffee, glass of water and then when done, insert a suppository. Signaling my colon to do this early in the am - get a lot of stool out. Well, I went for 5 straight hours! She was hoping the output wouldn't last for long (30-60 minutes perhaps?). I tried this again but it didn't really work for me. She said by eating a big breakfast and then doing the suppository, I was telling my sigmoid to empty itself each morning. But again, this never was successful for me. 5 hours of dumping - I wasn't working back then (stay at home mom) but I was a mess for 5 hours, cramping, heaving, rolling, my gut was crazed with activity. So she continued seeing me regularly until my 5 year mark. At one point, she suggested I have an inverted colostomy, because my upper GI tract was intact. She said I was an excellent candidate for this newer type of ostomy surgery - I would irrigate it once during a 24 hour period, and ideally be stool-output free for 23 hours. I would wear a "band-aid", actually something called an AM Patch over the stoma (flat with my skin). I left her office thinking - what the heck? More surgery? And I was extremely skeptical I would be output free for 23 hours. I thanked her for the suggestion but said not now, I need more time to think about
something so radical. I've never had this surgery. I've decided to just live with my colon - as is. And deal with it.
Once I realized I had nowhere inside for stool to collect, I actually accepted this fate and made a personal vow to figure out how to have formed stool as much as possible. Eating, not eating (travel times, work days, etc.), specific diets, etc. are all just a way of life for me now.
But I am nowhere near normal. As far as retaining stool and trying to hold it, I have tried that but it's painful. And when I finally go it's not pretty. So I have found it's best to just go as much as my body needs to but I can reduce the # of times by not eating several hours before an event or a work day. Keep in mind they did tell me I was a rare case, I sure hope you don't struggle as much as I have.
Post Edited (Marsky) : 3/15/2014 11:36:03 AM (GMT-6)