How long to get to the "new normal" after everything is done?

Steve:

As Sandia said, congrats on the "current" elimination of cancer. That was/is the greater concern for quantity of life. But your situation and concern now is about quality of life. My tumor and treatment regimen was similar to yours with the exception that I was a stage 2 AND I stopped the post resection surgery chemo therapy at three sessions. In my opinion it was doing more harm (neuropathy, fatigue, weight loss) to my quality of life than I was willing to accept. That was over 4 years ago and I remain cancer free.

Apparently I am one of the lucky ones whose cancer has not returned and who made it through the ileostomy reversal without permanent, debilitating bowels issues. I got reversed in late March 2018. For a couple of weeks I was "bathroom bound." Movements were frequent, unpredictable and uncontrollable. I was very discouraged, but still happy to not have the ileostomy. I slowly returned to my pre-cancer diet (50% of my daily food consumption was/is raw vegetables) and increased my physical activity level. Commensurate with that my bowels slowed down but still remained unpredictable. I reduced my trips away from the house until I got confident enough to deal with any consequences.

Over the years since then I have had some "accidents" but have been fortunate enough to avoid any social embarrassment. What really bothers me is that I still don't have total control over my bowels. I wore the diapers for a couple of weeks but then stopped - deferring that until I really get old (I am currently 70).

What do I think helped in my situation? Increase your daily physical activity. Experiment with your diet (what, when and how much you eat). Regulate all of your daily activities, which also helps to regulate your bowels.

Lastly, don't drink any cheap beer.

Be patient and try to not become discouraged. Never forget that the greater risk was brought under control. Cancer is lethal; fecal incontinence is a nuisance, albeit a significant nuisance that affects one's quality of life.

Jim

Welcome, I didn't get the top-shelf care some get, more like quick assembly line Kaiser-style efficiency, here in Cali., for most of seven years, but it worked out. The thing with Folfox chemo was, I did all 12, and some of the hand jive was with me still 18 months out, so have some patience, it may take a while. I didn't do the bag, but even without, the normalcy took it's time, but I'm now as I ever was, even 14+ years further on. Best of luck and clear scans to you from here on out.......................Dave

Steve,

i know this topic is a bit old but i still wanna reply to it, because i am having the same kinda trouble right now. I had a T3N1b stage colon cancer, no bag needed but chemo for 6 month. That came all to an end around easter time this year.

Now my guts are recovering from that nuclear strike called chemo. I also talked to other "victims" and heard quite the same numbers as you did. Anything between 6 Month and a year is possible it seems. I feel recovering very slow and i have to be very caucious with what i eat. Fiber is no problem but protein. I used to take a protein shake after exercising at the gym. But now that makes me literally feel like exploding. Other stuff that causes pain are garlic, cabbage, caulifower and fish (because of the protein). But i feel little improvement every week. So when i eat fish now i am only suffering for a day. At the end of chemo it was two days.

So all in all i can say, very little steps, but each steps improves.

All the best

At age 48, 29 years ago, I was diagnosed with rectal cancer. I had surgery with a very low sphincter sparing procedure. I was marked for a colostomy, but the surgeon was able to do a very low colo-anal anastomosis. After recovery I experienced frequent urgency and incontinence with my bowels, resulting in a rather poor quality of life, and I almost wished for a colostomy. However, after hearing about people doing periodic bowel cleansings for a variety of reasons, I thought I might try this for my condition. What I decided to do was to cleanse my bowels with an enema using a rubber water bottle and hose. I found this to work quite well. I have to do this every 2 to 3 days, and it takes about an hour or 2 to complete the process. This has allowed me to continue with a completely normal life other than the inconvenience of a couple of hours every few days. I have been doing this for over 25 years now. I am currently 77 years old, and I am quite happy that the surgeon decided not to give me a colostomy.

Hi all,

since about 2 weeks i got a new problem. Every day i feel a discomfort in the lower abdomen and a light nausea. Not strong enough to throw up but enough to lower my appetite and to just feel bad. Last checks in June (CT and ultra sonic) did not show anything unusual. I want to go on a holiday trip to Norway next week but now i am a bit frustrated 'cause it does not improve.

Has anyone had the same experience of permanent nausea month after chemo ended?

Thanks a lot

STI, my recollection was light nausea, low appetite, the jaw thing of tension. It all went away, and did help take some weight off, or keep it off for the duration. It was low on my issue pole...................................Dave

just received the blood panel and it shows all 3 bilirubin values raised: total 1.93mg/dl; indirect 1.44mg/dl; direct 0.49mg/dl. Also anorganic phpsphor is low 0.68 mmol/L.

I will have my liver inspected with ultra sonic next wednesday.

have a great day

Dave, congratulations for your way, it looks like everything went well.

I am just a bit concearned because my chemo is already finished since May this year. And now i have these bad bilirubin values and a pressure feeling around the liver. I am planning to go to Norway next week and of course i would like to enjoy it. That's why i am a bit careful and wnat to have it all checked before the trip.

thanks

Guido