Uncontrollable loose bowels: When does it get better?

@mallika58, welcome. Losing control of one's bowels is a miserable situation and very limiting. I'm tagging fellow members like @corn50 @lisag03 @tracilynn1969 @margreet @bea1972 @alice9 who can offer their experiences and encouragement.

It does get better, if not perfect. Are you still taking chemo?

Hi,

Sorry you're going through this. The intermittent incontinence is tough. I still go through it to some degree, but it has significantly improved. What I did initially was try adult support, but found anything tight on my waist very painful. So, I got maxi-pads and a 6 pack of amazon granny panties. I felt isolated and embarrassed, then go over it b/c I didn't ask for this - and the GI system is not anything to be embarrassed about. Colon cancer, resections, surgeries are not a source of shame - but yes they are inconvenient.
It will get better!

I went through this for a brief time period. Ultimately, it was probably caused by the Xeloda but my GI doc prescribed cholystramine and had me take larger doses of it multiple times a day. It did help somewhat, but once they discontinued chemo, it was gone. I’m fortunate that I was able to really eat whatever I wanted for the most part, and I felt so junky that I just didn’t eat that much. But I did just limit my eating if I knew I had to be away from home. It does get better.

Hello Colleen,Thank you. Yes,I still have to go through 6 Chemos once I stabilise on the current problem. After 3 of them scans will be done to determine next step with regard to the rectal primary.

I am in my 4th year in remission of stage 4 colon cancer and am doing well except the occasional bowel incontinence , talked to my GP who said it may have to do with a partial resection of the Pancreas and liver which gives some problems with fat absorption of fat and enzymes in my digestive system, Now I am on a small dose of Cholesteramine and that has solved the problem so far.all the best to you.

Stage IV CRC (HER+ive ). I am on targeted therapy since last 7 months ( Trastuzumab + Tucatinib combination ) . My constant source of irritation /problem is gas and flatulence, persistent low intensity stomach pain and constant feeling of wanting to go to toilet. I visit the toilet about 5 times a day . This is affecting my quality of life significantly , unable to go out much due to constant fear.
I have been taking a low dosage of Lopamide ( Imodium ) and it seems to help a bit . A concern is that prolonged usage may have other side effects , though my Dr says you can take the low dosage for extended period .
Anyone has / had such problem and any suggestions on how to manage it better? We are pure vegetarians , low on spice and fatty stuff.
If I can get this problem under control I can certainly live better .
Mallika

I am close to a 1 year mark from a sigmoid clon resection w an extra resection of about 20 inches of intestines. I struggled for a long time, being a VERY fit and active individual. I take 1 capful of myralax after my last meal of the day and very rarely have issues anymore. I wear a panty liner in my underwear just for protection, but it is usually unnecessary. Unfortunately, this has been a life changer, but I am stubborn and refuse to give up my active life of tennis, bike riding, lap swimming, pickleball, and travel. Don't get discouraged. Be strong.

Yes, stay strong and be brave...this too shall pass. It has been very up and down for me. The granny undies sound like they are a good idea. I may have to try them, too. Want to chat?

We were never told to listen to our body and do what it told us to do or not to do. About a third of my GI track has been removed, including all of my sigmoid. I never was very active nor wanted to be. Unless you are a teenager and have to prove to someone that you are better than the entire school. It is time to slow down and listen to your body. You don't have to ride your bike as fast as you can, slow down and smell the roses for the first time. You don't have to swim the fastest laps, to set any records, try swimming the slowest laps. Choose one of your favorite activities and do it, not all of them. You are not stubborn you are just trying to destroy your body. We are given only one body and if we don't take care of it, it will be taken away from us. Each time we have a birthday we have to remind ourselves that we cannot do everything we did last year and have to s-l-o-w down if we want to see our next birthday. Don't destroy your body, take care of it. Good luck. mlmcg

Are you taking Imodium? Mine isn’t uncontrolled but gosh its a lot of diarrhea daily and that helps me. Throws me to the other end and then I take something for that. Its been a balancing act. I am so sorry you are going thru this! ❤️