Bowel frequency after reversal

jara1166

My husband had stage three colorectal cancer. He had a resection and a temporary colostomy bag. He has since had his bag reversed but, ever since then he has been dealing with frequent bowl movements. He will need to use the bathroom up to 15 times a day and each time he will pass just a small amount of stool. Has anyone else dealt with this and have any advice. tips or tricks? Or can tell us how long this might last? He can't sleep at night and is afraid to leave the house. We have asked out doctors about but they have not been any help. He can't be the only one who has ever dealt with this.

Trubrit

Hello, Jara

I have not had a bowel reversal, but a resection. I know many on the forum have had a reversal, and hope someone will be along soon, to answer your question.

I know my road is a little different, because I did not have a bag or reversal, but I was also tied to the house for several months after finishing treatment, going to the bathroom several times a day and night. I do remember that as the months progressed, and I knew I had to leave the house at some point, I started a little walk around the block, and a quick trip to the shops. Baby steps, for sure.

My best friend of 50 years, also mentioned that I might be experiencing what they call, Latchkey Incontinence, normally associated with the need to urinate. As soon as I saw the house, the need to have a bowel movement was instantaneous, and often I didn't make it to the bathroom. Once I realized this was happening, I had to train myself to hold on. Sounds easy, but it wasn't. It was very much a mind over matter situation.

My need to go to the bathroom frequently, lasted several months, and I think that is what caused the latchkey reaction. How long has it been since your husband's reversal?

Remember, every person is on their own time-line for healing, and I hope that as the weeks progress, improvement is seen.

Also, if the Doctor's aren't concerned, that is a good thing.

Hopefully someone who has had a reversal, will be by to give you their first-hand experience and advice.

Tru

airborne72

Jara: I had an ileostomy for six months before my reversal surgery. Spent four nights in the hospital and hurt badly after that procedure but I was sooooo motivated to get out that I convinced them that I was walking out not riding in a wheelchair. It was a 10 minute drive to the house and I was not sure that I could last that long without sitting on a toilet. But I made it.

The next three weeks were very discouraging. I was afraid to eat so many different foods that I used to love and my trips to the bathroom were numerous and unpredictable. However, slowly my intestines calmed down and regulated.

That was over five years ago. My digestive system is not what it was before cancer and its treatment but it is my new normal and I have learned to live with it. Most days I am in charge. Some days my intestines are in charge.

Tell your husband to remain positive and hopeful. It will get better.

Jim

Forbin

I had an ileostomy bag reversal back in december. My original surgery was about 5 cm from the anal verge. A few nights after getting home from the hospital it was like a tempest in my stomach and I was shitting uncontrollably. For about another 3-4 months I wore depends regularly for fear of an accident and regularly had a burning feeling in my rectum and massive cluster s****. At about 6 months it completely stabilized. After about 2months from leaving the hospital I started taking metamucil once a day, and even now if I take a day or two off from metamucil I will have a rough day.

jellybn999

Sounds like your husband has LARS or lower anterior resection syndrome. Go to the Facebook page “Living with Lower Anterior Resection Syndrome” and you will find your tribe. There are lots of us out there suffering like this. You will find tips and tricks and camaraderie on this FB page. I am on that page too. I have the same thing and I’m 5 1/2 years out, Stage 3b rectal cancer, jpouch, no reversal, stricture at anastamosis.

Annabelle41415

https://csn.cancer.org/discussion/326815/bowel-frequency-after-reversal

I'm sorry to hear that your husband is dealing with those issues. It's bad enough that he had cancer, but now the after effects of the surgery. I too suffer from the same thing, going up to 15 times a day (after 15 years). Unfortunately mine never got much better but most do improve where there is no problem whatsoever. I just go without eating all day if I need to go out and this helps most accidents. You can try a prescription from the doctor to bind up his stools, but be careful that it doesn't work the opposite and make him constipated because that can be almost as bad. Doctors don't seem to have an answer for questions like this for some reason. I hope that he continues to improve and wishing him the best.

Kim

Trubrit

https://csn.cancer.org/discussion/comment/1710781#Comment_1710781

Yay, Kim! I checked on your forum activity just the other day. Missed seeing you posting here. Like allot of us old members, we pop in now and again. Anyway, good to see you post.

slam18

https://csn.cancer.org/discussion/326815/bowel-frequency-after-reversal

I'm in the same boat right now how long did it take to resolve?

Annabelle41415

https://csn.cancer.org/discussion/comment/1724052#Comment_1724052

I too suffer from the same thing, going up to 15 times a day (after 15 years). Unfortunately mine never got much better but most do improve where there is no problem whatsoever. I just go without eating all day if I need to go out and this helps most accidents. You can try a prescription from the doctor to bind up stools, but be careful that it doesn't work the opposite and make him constipated because that can be almost as bad. Doctors don't seem to have an answer for questions like this for some reason. This was copy and pasted from something I wrote 2 years ago. Wishing you the best.

Kim

Arx001

Hello,

Thanks for the relevant question and the super helpful answers. I’ve had my LAR/TME surgery six weeks ago and plan to have my temp ileostomy reversed at the end of next month. I’m having a pretty hard time with the urgency and the incontinence and the rectal pain.

Do you think a permanent colostomy is a better choice if I can’t fix the tenesmus and incontinence after the reversal surgery? Maybe better to have my rectum removed entirely? I’m relatively comfortable with the ileostomy…

Annabelle41415

https://csn.cancer.org/discussion/comment/1724058#Comment_1724058

That is totally up to you and you should pursue this further with your doctor. I did ask my doctor before having the reversal if things didn't work out if I could go back to an ileostomy and he said yes. But I wasn't comfortable with it, however there are some times I just wish I had left it. My biggest things was the food restrictions. The no popcorn, corn on the cob, mushrooms, etc I absolutely love, so I retained some of my favorite foods but gained some inconvenience. Wishing you the best.

Kim

Arx001

https://csn.cancer.org/discussion/comment/1724069#Comment_1724069

Thank you 🙏

iron9nadin

So glad to read all your shares here. I am also in a similar boat. My goals are to see if the type of food and timing of the eating will help me get to a regular schedule. I don't like getting up in the night every 2 hrs to poo. I'm curious what "a little bit at a time" Means for folks.

I had LAR apr 2025, had iliostomy for 7 weeks and my reversal in June 2025. I had top of rectum removed, which is what I attribute my urgency and frequent movements too. If I only have 5" of rectum, is my sigmoid colon letting Said amt of poo through for exiting the body. I've found I have to go about 30min-1hr after eating a meal, and then at the 2 hr mark and then 10pm for a few times and then 2a, 3a, 5a etc.

I know what we eat, when we eat and how well we chew has a lot do with how often and fast things process as well as the consistency on exit. I do find I have a 24-30 hr transit time, which I like. I'd rather not have anything piling up inside me for an extended time.

I'm wondering if anyone's doc has given any timeline. Mine said everyone is different. If one can't get it manageable in a years time, then can talk about putting osteomy back. I'll be working with my system, listening to cues and taking notes for forward positive progression!!

Pomona

I got an ileostomy from my colon tumor removal surgery in May 2023. I'm leaning towards keeping my ileo versus having it reversed. Build up of more scar tissue, potential for digestive issues folks have bought up on this forum plus the meetanostomate.org forum.

iron9nadin

It wouldn't let me download and attach the pdf of this. I will be trying this asap.

Adding psyllium was suggested to me after surgery. This document has a clearer plan and makes that easier for me.