Loperimide after ileostomy reversal

Hi 66Robin. It can take up to 18 months for your bowels to settle down after a reversal so hopefully things will improve for you over time. Loperamide is useful to help with your bowel movements and should be taken 30 minutes before eating. It’s also good to keep a food diary to see if some foods have a worse effect than others - it’s been 4 years since my reversal and I still find iceberg lettuce to be a trigger. I used to take 4 loperamide a day - 2 before breakfast and 2 before an evening meal - and my surgeon said that might be for life. I then moved house and saw a different consultant who told me I was constipated and only to take loperamide before a special occasion like a meal out! I’ve tried to cut them out but find that I when I do ‘go’ it seems to unleash a flurry of very loose visits so I’ll take a loperamide then not go at all for a couple of days! It’s tricky to find a balance but you could start on a low dosage and see how it goes?

The talk in the link below is quite interesting too 

https://community.macmillan.org.uk/cancer_types/bowel-colon-rectum-cancer-forum/f/general/232375/regaining-bowel-control

Hope this helps a bit and hopefully some of the others might pop in with their thoughts too

Hi everyone I'm 4 months post ileostomy reversal and have to take upto 30 imodeum a day but still going to the toilet at least 15 times a day night time is the worst don't get much sleep some days fine for a couple of days then its back with a vengeance i just keep wishing i had never had it done it's so inbarasing at times not making it to the toilet often sit and cry  

Steve 

Im so sorry. It’s just humiliating I felt terrible to start with but I haven’t had anywhere as near as bad you. I fully understand that you regret having it done

Can you phone your team there’s lots of support for LARS ?

Also have you found that your diet causes issues  im experimenting a little and have found certain things react badly I am safe on stodgy beige food Not exciting but safe at the moment 

I hope that you have some medical advice it is possible  you may be constipated and loosing fluid not passing the hard stools. The fluid is not controllable . The loperamide made my stools hard I’ve slowed their use  

I hope things improve. 

Hi Steve B. I’m sorry you are having such a torrid time. It may be that the excessive immodium is causing something called overflow diarrhoea whereby the loose stools from higher up in the system leak past the constipated stool? You really need to speak to your team and see what they advise or you could post in the ask a nurse section on here.

Ive attached a link to a video talk that was given by a gastroenterologist which may have done useful advice?

https://community.macmillan.org.uk/cancer_types/bowel-colon-rectum-cancer-forum/f/general/232375/regaining-bowel-control

https://community.macmillan.org.uk/cancer_experiences/ask_the_expert

Take care

Karen x

Hi Steve B and 66Robin

It can be really tough early on. If you read my story, we may see that there is hope. And plenty of options. You might care to look at the posts in this special area for reversalists. I’d encourage you to talk with your nurse specialists and seek their support in trying out some of these options. 

For example, I swapped a ton of Loperamide for one Ondansetron every other day!  

Some of the options seem weird, but it’s amazing what works. 

Here’s the link: https://community.macmillan.org.uk/cancer_experiences/ileostomy-and-colostomy-discussions-forum/f/stoma-reversal-and-lars