Codeine - long term use

Hi and welcome to the board. Gosh 9 years is a long time to be on codeine. I know that it is common practice to use it to control diarrhoea but it’s not something that I personally would be happy with so I can understand your concerns. I’m glad to see that you’ve posted this in the Ask the Nurse board as I think they would be the best place to offer advice - doctors are all well and good but sometimes a bit of specialist insider knowledge is required.

I know the normal doseage of immodium/loperamide is 8 a day but I think you can take a lot more than that if required but you would need to be medically guided about that. Your doctor would also need to manage you coming off the codeine. Presumably you have now been signed off from the hospital but I wonder if your doctor could refer you to a dietician or nutritionist? It seems so unfair that you’re still struggling so long after surgery and everything. 

Im sorry to see from your profile that you’re still struggling to enjoy life after your treatment. 9 years clear is a great achievement but unfortunately people who haven’t walked in your shoes can’t always understand the long term effect it can have both mentally and physically on you. Do you have any Maggie’s support centres near you or have you considered some form of counselling?

Ive attached a link to an article which has helped others in the past and I hope it helps you too or even just helps you realise that your emotions and feelings are not unusual

https://www.workingwithcancer.co.uk/wp-content/uploads/2013/03/After-the-treatment-finishes-then-what.pdf

https://bowelcancerorguk.s3.amazonaws.com/Publications/Living%20well.pdf

Take care

Karen x